2011-11-17-Focus on the Family
Seminars@Hadley
Focus on the Family
Presented by
Rev. James W. Wranke
Moderated by
Billy Brookshire
November 17, 2011
Billy Brookshire
Welcome to seminars at Hadley. We are so glad you’re here. My name is Billy Brookshire and I have with me Shirley McCracken. Shirley will be taking over these webinars and doing a lot more of them starting in December. So this is kind of her maiden voyage if you will. So welcome Shirley. Give her a hand by holding down your control hey if you want to. That’ll be kind of cool. Shirley’s really looking forward to this. You’re going to enjoy her a lot.
Today for our presentation, there’s all those hands. Look at that Shirley. Thanks folks.
Shirley McCracken
Thank you.
Billy Brookshire
Today your presentation is called Focus On The Family and our presenter is Father Jim Wranke who is just an exceptional presenter and has been there himself. He’s got lots of interesting information to share with you. I hope also you guys will ask lots of questions because that’s kind of how you get to the meat that you want from any presentation. So by all means ask whatever questions you want to. We’ll be watching the chat room and we’ll release the microphone right at the end of Father Jim’s presentation.
So ladies and gentlemen, without further a due as they say, here’s Father Jim Wranke.
Father Jim Wranke
Good morning everyone. I am indeed Father Jim Wranke. I am a priest of the Episcopal Church. I’m a licensed clinical social worker; a shrink as it were. One of my subspecialties is working with folks in adjustment to vision loss, which I’ve done over the last 33 years.
I am, myself, visually impaired. I have retinopathy of prematurity from infancy and in midlife developed acute closed angled glaucoma, which is the painful form of that particular disorder. So I went from having vision of 20/400 in one eye only to vision of about 20/1000 or more. So I’m both congenitally visually impaired but have also experienced a very significant vision loss.
Our topic today is indeed Focus On The Family. I hope to talk with you for about 30 minutes, maybe 35, and then to get to the real heart of the matter which is to try as best as I can to respond to your questions and your inquiries.
The first point, which is really self-evident and is sometimes for better and sometimes for worse is that we all belong to a family and families belong to each one of us. And so whenever we think of an individual who is blind or visually impaired, no matter what their age, we need to imagine them standing within a family portrait. And that family portrait also includes some invisible members even to sighted people. Deceased grandparents and great-grandparents even are all part of a family system. And that’s the second point I want to make about families.
Families are systems, they’re ways that humans interact with one another in a multi generational fashion over long periods of time. And so anything that effects one person, one member of the family, ends up in some way effecting everybody else in the family even if that effect is somewhat indirect. And so I’m going to want to talk with you about thinking about this family system also, and this is my third point, as having a life cycle. Just in exactly the same way or at least in a way that is very significantly analogist to an individual, families have beginnings, middles and ends. And people move through various ages and stages in this family lifecycle. And when visual impairment or blindness occurs at each one of these stages there are significant issues, there are significant things that need to be addressed in one fashion or another.
I once had my wife come to me and describe a cartoon from The New Yorker magazine. It was a conference room in a hotel with banners and chairs set up for the speakers. And the banner read “The American Society For Functional Families” and the room was empty.
All families exist on a continuum from kind of normal and healthy-- and normal and healthy families by the way, that’s a big wide swath. We’re all a little quirky. We all do things a little differently, experience things a little differently, come from different cultural, racial, religious, ethnic background. All of that contributes to the kind of flavor that exists in the families in which we grew up in and the families that we as adults create and in the families that we grow old in.
And so this lifecycle idea is really important. And one of the things that I found in my 33 years of clinical practice is that when someone in the family is blind or visually impaired and are experiencing significant difficulties, often the intervention is best made through the larger family system towards getting the people in the family to see what can be done and what can’t be done and who can do it.
Also in families there is a power structure okay. We’ve all had experiences, usually at McDonalds or Burger King of being with families where the three year old is actually the one who’s in charge and making the decisions about who’s going to do what and when. That’s not a power structure that I recommend but it’s one we clearly see. There are other families in which the most powerful person had been dead for 11 years; grandma or grandpa. And whenever parents make decisions about their children or decisions about their own life trajectory, what’s running in their mind is what would grandma or grandpa expect. What would grandma or grandpa say. I’ll get to that a little bit more later on as we move through our time together. But I want you to think about families in this kind of way.
And what I’m going to take for us now is a model developed my Monica McGoldrick who is at the Rutgers School of Social Work who has written several books but her oldest and best I think is called simply The Family Lifecycle and I’m going to imply some of her stages and phases to families where there is blindness and visual impairment.
McGoldrick begins at an interesting place. The first phase that she talks about in a family’s development is when a family begins, when a young couple gets together; a young man and a young woman get married, two young people partner up and begin to face life’s challenges in a committed relationship of one sort or another. Now this is a challenging time for any young couple but imagine with me that one or both of these persons is blind or visually impaired, okay. Then there are particular difficulties and adaptations.
First of all, something I say to young adults that come into my therapy room all the time who are blind and visually impaired and they’re involved in keeping company and dating. I’m dating myself with those phrases now. I don’t know what else to call it. They have to struggle with whether they’re looking for a life partner or whether they’re looking for a case manager. Are they looking for a home health aide or are they looking for someone with whom they can really partner up. People become anxious. Am I going to be able to pull my weight? Are they going to be able to partner up with someone that they can really share a life with? As all of you probably know, the employment statistics for folks who are blind and visually impaired are pretty abysmal, up in the 80% of unemployment areas. And so this is a real concern for people beginning to partner up or couple up.
Also, for young people starting out, just the ordinary things of where will we live, do we need to live on a bus route, how are we going to be able to get to work if we’re lucky enough to have it, anxieties about children. I remember many, many years ago when the dinosaurs roamed when I asked my wife, Marie, to marry me. She came in a little while after she accepted and said that one of her best friends had taken her aside and asked her if she had really considered what it would mean for her to be married to a man with a significant disability. She was quite irritated with her friend and I was actually quite pleased with her friend because the last thing I wanted at that moment in my life was for my disability to be the elephant in the room that nobody ever spoke about. By the way just to show you that I partnered up with somebody in this almost 42-year-old marriage who is pretty cool, her response to that question on the part of the friend was “Well he’ll never argue with me about who’s going to drive home.” And that’s a response that I was very pleased with as well.
The next phase in McGoldrick’s structure is family with young children. When kids start to enter the family through birth, through adoption. Young children are a handful. And if the parent is blind or visually impaired there’s lots of anxieties that go along with that, lots of questions, lots of misunderstandings.
I remember when my kids were young, the most anxiety provoking stage for me was when they were too young to talk because they couldn’t tell me what was wrong or what they wanted or what they needed. And so we had to set up networks for assistance; multiple backups incase somebody fell and needed to go to the emergency room or got a splinter in their finger when daddy was the one who was in charge.
Also consider a family where one of the children born into that family is blind or visually impaired. All parents look with loving anticipation on the birth of that perfect little bundle of bubble of joy that they’re going to get. Well what happens if there’s something significantly amiss with that child? Parents become anxious. We don’t get an operators' manual with any child but parents certainly don’t get an operators manual with an appendix that says what do we do if my child is significantly visually impaired or blind? And parents become quite anxious. Emotionally people need to mourn the loss of the child that they had anticipated so that they can fall in love with the child that they have. And they need to reach out to lots of groups like the National Parents Association, [NATFE] and others so that they can receive the early intervention and support that they need so that they can enjoy their children as well as provide them with the best possible environment that the family can offer to them.
Now let’s move on to McGoldrick’s next phase and that is the family with adolescents. Adolescents in the United States has in some ways become functionally extended. When I was young, again when the dinosaurs roamed, you stopped being an adolescent when you went into the army or when you graduated from high school or when you got married in your early 20s or when you graduated from college. Those were the conflation of events that marked the transition into adulthood. Given the current state of the economy and other dilemmas, adolescents now can stretch well into the mid 20s. There is a phenomenon that is written bout now that’s called Boomerang Children. Children who go away to college and then come home and end up living on mom and dad’s couch again because there’s no work or because they need further education or training before they can enter the job market or because finances simply dictate it.
Adolescents is a difficult transition. It’s a time of separation and individuation. Now again, imagine with me in this family that we know mom or dad or both are blind or visually impaired and are working with someone who now can talk. Unlike the infant they really can talk but they really don’t. “Hi, how was your day?” “Okay.” “What did you do?” “Nothing.” “What happened in school today?” “Nothing.” Etcetera, etcetera. Obviously I am caricaturing a big but sometimes caricatures are not that far from the truth.
Also imagine that the child, the adolescent is themselves blind or visually impaired. They’re now moving, even though they still may have individualized educational programs; IEPs are what they’re called in NJ, I’m not sure what they’re called in the states that you live in, who are working with school systems. It’s a time when children and adolescents want less parental involvement often or are sometimes conversely frightened to have less and they begin to become anxious about keeping up with their peers.
One of the most traumatic events in the life of a blind or visually impaired adolescent is often when their friends get their drivers licenses, hop into their family cars and head off into the sunset while the blind or visually impaired adolescent is left taking the bus, taking the subway, bumming rides from everybody, having their mom have to bring them someplace. This can be very difficult. This is also the time, the phase, when people begin to develop sexually and romantically; they begin to figure out what their sexual orientation is, they begin to want to date.
Now most of you will know, if you think about it for a moment, that most courting behavior among humans, about 80% of it is non-verbal which is to say visually mediated. The way people look at each other, they way they carry their bodies. And for those of us who are visually impaired or blind, those signals are either barely present, easy to misinterpret or not present at all. A story might illustrate this.
Years ago I went to my 25th high school anniversary reunion and there was a lovely young woman there. She was a cheerleader, she was a year ahead of me in high school and I just carried a torch for her for one of the years I was in high school. She had to walk past my home to get to school and I would sneak into the garage and hide behind my father’s car until I heard her and her friends walking up the street so that I could, just by pure chance you understand, just by pure happenstance be wandering out at the same time so I could walk with them to school. I never had the nerve to ask her out on a date.
Well here we are at the 25th reunion and she comes over and everybody’s kissy face and happy and we’re dancing on the dance floor. And she says to me, “I got to ask you this.” She said, “I had such a crush on you in high school. How come you never asked me out?” And I said, “I was terrified, you were a cheerleader, I was the little disabled kid, I thought I was a dweeb.” She said, “I used to bat my eyelashes and wiggle my hips to try and get you to pay attention.” At which point she looked in my face and I looked in hers and we both started to laugh hysterically. I said, “You know you could have sent me a note because I wasn’t going to pick up those signals. I wasn’t going to pick up those signals at all.”
And as we know, adolescents is an awkward time for most, if not many adolescents, whatever they think it is about them they think is not good often. They’re very socially learning and therefore socially inept. And the penalties for getting flirting and dating behavior wrong, well they’re very hurtful in adolescents and as we move into adulthood the penalties are actually fairly significant for getting those kids of signals wrong. So we need to approach these things adaptively.
The next stage that McGoldrick talks about in The Family Lifecycle is the launching of young adults out into the world to have lives of their own. It’s a transition of often three to five or more years. The shift from being financially dependent on parents to being financially Independent. The shift from living in the parental home and following parental rules and moving out into figuring out what their own rules of life are and what their own rules of conduct are. Figuring out how to now have adult relationships with mom and dad who are no longer mommy and daddy but mom and dad.
Now when one or more of the parents are visually impaired there can be anxiety on the part of the young person moving out into the world about abandoning the parent whom they may very well have provided invaluable assistance to. In my family, my children are seven years apart, they’re now 40 and 33, when each of them got their driver’s license we kept a second car. It wasn’t their car; it was the second car for the family. They had to ask permission to use it but much of the deal was they got to take the care to school and to use it for things they wanted to and their responsibility became driving dad anyplace dad needed to go. I put gas in the car, that was the arrangement and blessedly for us it worked out rather well.
I remember it was just at the moment my oldest, my son, was a freshman in college when I developed the acute glaucoma. And for reasons that are too long to enter into here, that with some anxiety that I could suffer at any moment a retinal detachment and become totally blind. And I remember when my son came home from college, he was from California for Christmas, I took him aside and explained to him that we had enough money to put aside for at least his next year and we had talked to his grandparents. And if I was going to be out of work, if I was going to have to go through an extensive adjustment period and not be able to work, it wasn’t going to affect his college education. Forgive me, I always get teary when it ell the story. The kid turned on me at that moment and said dad if you lose all your vision, do you think I’m going to sit in California with my thumb up my nose complaining that the tuition check isn’t on time? He said I’m going to take a leave of absence from school, I’m going to come home, I’m going to get a job, I’ll go back to school when things are more stabilized. By the way I mark that as the moment at which I recognized that my son had become a man and I was proud of him although I probably never would have allowed him to do that. It was quite an eye-opener for me.