RRTC live webcast. Supporting people with difficult behaviors. 2:00 p.m. EST. Captions Provided By: Caption First, Inc. *********************** DAVID PITONYAK: Hello, it's a pleasure to be here today. About 15, maybe 20 years ago, I was asked to do a presentation for a group of parents in Vermont, the state where I lived. I don't remember what the title of the presentation was exactly, but it was something like supporting children with special needs with positive approaches. The idea of the presentation was that I was going to impart knowledge to parents about different ways that they could support their children, if they had difficult behaviors. It was a behavior modification workshop where there were a lot parents in the group. One of the parents sat up straight in her seat and said: Excuse me, but my daughter does not have special needs. Now, I did not know her daughter well. I had observed her daughter on occasion. Her daughter is in the severe range of mental retardation. She had seizures that were difficult to control with medication. She had a shunt in her back to drain fluid from her head to her body cavity. So I was thinking that that is a young girl with the special needs, and it was this woman's daughter. But she said something that profoundly changed the way I see my work. She said: My daughter does not have special needs. She has the same needs as any other kid. She has the need to live at home with her family, have clean sheets, say her prayers at night, and have home cooking. She has the need to get along with her sisters and brothers, and to fight with them like cats and dogs. She has the need to go to school with the children from her neighborhood. She has the need to be a loving daughter and a hateful daughter, too. In short, my daughter doesn't have special needs. She has the same needs as any other kid. Well, I felt like I was punched, knocked down to the floor. But then she hit me from the other side when she said: Sometimes you professionals, in your effort to provide people with special supports, you forget the ordinary, everyday things that people need. Well, once again, I felt that I had been punched. I looked at my overhead transparencies, and the overhead transparencies were all about behavior modification. I didn't know what to say. I didn't know about ordinary, everyday needs. I wasn't sure how professionals, in our effort to provide special supports, might sometimes get in the way. But ever since that night, I've been wondering what are the ordinary everyday things that people need, and how is it that we as professionals forget them? And I'd like to talk about some of them today, but in particular the one that I think is the most important is people need to be in a relationship. Loneliness is not the only disability. I travel throughout a lot of places in my work. I meet people who are said to have difficult behaviors, and they do things that other people wish they would stop doing, but I also met people in our business who were lonely and I know you met people who are lonely, too. I go places where people shake my hand and they don't let it go. I met a man one time who said to me, as he held my hand, do you know Adrianne? I said no, I'm not from around here. He said Adrianne. I said what a beautiful name. The staff member was repeating, let go of his hand. Let go of his hand. And then she whispered in my ear: We have him on a program for this, don't give him eye contact, as if I was supposed to shake his hand and look away. I looked over to him, but before he let go of my hand, he said: We are going to be married. I said really? We set a date. The staff member said: You are not going to marry Adrianne, she doesn't have the same case manager as you do. Do you know the amount of interdisciplinary planning that would be necessary for you two to get hitched? I saw him later in the day, after I had done my other business. He grabbed on to my hand, he shook my hand and he would not let to. He said to me, do you know my girlfriend? I said Adrianne. And he smiled at me from ear to ear. He said that Adrianne kissed me. I got the feeling that he had -- that his kiss with Adrianne, it turned out that he had not seen his Adrianne in over 3 years. Loneliness. You know what I'm talking about before I start talking about it. I go to places where I meet people and the only way they can create engagement with other people is that they have to have a problem. It seems the only people in their lives are people that are paid to be with them, people like you or me. And what they do is the only way I can have any time with anyone is I have to have a problem so someone with come to try to fix me. Other people react as if they don't know how to do things. Don't generalize. We found that the only way you can ever get someone to spend time with you is to act like you don't know how to do things. A lot of people lose their jobs because of social reasons. They are not connected to other people. And as far as I'm concerned, unless jobs lead to connections with other people, jobs are meaningless. We are not sure about this. We are not sure how to help people. In our profession, we often don't talk about it. It doesn't even come up in conversation. We talk about funding streams and interventions and programs, and the latest information technology. But what is more important is the relationship with people. And I believe that's the central reason why people who experience disabilities have difficult behaviors. It's a central reality for people, and much of what we do, much of what our system is about, it's nothing but a physical manifestation of our inability to sit still with people around this central issue of loneliness. I met a man whose name was George. And George, he was a difficult guy to support. Some people said he had autism. I'm not sure what was going on for George, but George sometimes would become very upset and would throw things at people and hit people. No one could figure out half the time what was wrong. But a person came in his life, a caregiver named Steven, and Steven and George hit it off the first day they met. They were like buddies from the time they met. George would put things down as soon as he saw Steven. When Steven was not able to take care of him, Steven would put his arm around George and say: Sorry, pal. And the staff would say why is George upset? And Steven would say well, he is just sad. Or sometimes the staff was upset with Steven. They said he was giving too much attention. And Steven was that kind of guy that would rebel against things and say screw off. He used to follow the Grateful Dead. Steven was -- you've heard this story a lot of times. He used to follow the Grateful Dead. They fired Steven, and you know what happened to George? His behavior got worse and worse and the emergency crisis team came running in the middle of the night. They threatened him. He had to behave. If he didn't, they would call the police. And then a guy like Barney Fife -- I found another woman there. I said where is Cindy? Can you imagine how you would feel? Well, Cindy is not here, but don't worry, we have you covered. If you understand why that joke is funny, then you'll understand there is a huge difference between the relationships and coverage. We are giving people coverage, and what they desperately need is to be in a relationship. It's loneliness. It's one of the most significant disabilities of our time. In my mind, it's a real disability. When you have people in your life who you love and who love you, you can get through anything that you've got to get through. But when you're lonely or isolated, you are in jeopardy. To be vulnerable is not to be in jeopardy, to be vulnerable and isolated is the matrix of disaster. When those two things intersect, vulnerability and isolation, you are in jeopardy. And the people we provide support to are in serious jeopardy from their loneliness, not from the absence of skills or from the disabilities, but from the isolation they experience on a day-to-day basis. I've been working on this for 25 years, and not once has a person with disabilities ever came up and asked me to redo their vocational assessment or asked me to get them an updated psychological evaluation. What people talk to me about when they talk to me is they talk about their people. Sometimes folks come up and ask me about their mother, or what they are going to do with the families. They don't talk about the Medicaid waiver or whatever, they talk to me about their people. Now, there are lots of reasons why people might engage in problem behaviors, and if you are interested in other resources you can look at my website, www.dimagine.com. There is a section called 7 questions to guide the development of a support plan, and you are welcome to visit there for other resources about supporting people who experience disabilities. But what I'd like to talk to you about now are some practical strategies for supporting people to develop relationships. Some things you can do tomorrow, even if the funding don't change or even if the resources don't come to your disposal tomorrow. Things that you can do to make a profound difference and a great way to increase the odds. The point I want to make is that there is nothing you can do to make people care about someone. You can't mandate caring. People do all the time care about folks, they care about them deeply, but you can't mandate it. You can't provide in service training or insist upon it in a job description. It happens all the time, but you can't make it happen. And why people come to care about each other, to become friends, there is a mystery involved. And there are certain strategies for helping people be connected with each one. The most important work that I do in my life is what I do when I'm not sure about the outcome. So what I want to talk about are things that don't guarantee relationships, but they greatly increase the possibility that people will find meaningful, long-term relationships with the folks in the broader community. Here are a few strategies for building relationships. One, if you want to know about relationships and why relationships are important, you can find out more about warming up to the people right next to you than you can find through me or from an in service training or from a book. All you need to know, you can find at home. So, I ask you, if you're in partnership with someone, when was the last time you kissed your sweetheart on the neck like you always used to kiss your sweetheart on the neck? Wake up to the power of your relationship. I believe that a lot of parents of children who experience disabilities give up their relationship at some point because they become distracted. They become researchers and advocates and drivers and their kid's best friend. And sometimes all of that is absolutely necessary. But they also sometimes lose track of the person who they fell madly in love with one day. And so I try to remind parents all the time to wake up to one another again. Where is your romance. A lot of people who are watching this program today, when they meet someone with disabilities and who is lonely, it reminds them of their own loneliness. Paying attention to your own lonely spots can make a huge difference with what you do next. There are children growing up around you like weeds. Lots of people in care giving roles come to their work on a regular basis. They go to work, but they feel like they are foregoing their children. Their children matter the most. It takes a lot of energy not to be home with your kids, to make the time to be with your kids. Go home to your children, wake up to what remarkable people they are. You'll find all the energy you need doing that, to do this work of helping people who are lonely to find relationships. It might be your mom and your dad who you are in the process of saying a long good-bye to right now. They need to hear from you. They need to hear the stories of remarkable things they did for you when you were a little girl or a little boy. It might not be your biological parents, but there's people who raised you. They need to hear those stories now. Like it or not, you might be in a long good-bye, and if you are ever going to do this work you have to pay attention to all the energy that you hold around the people who raised you. There's lots of places to go home to. You also have to make friends with yourself. Wake up to what a remarkable person you are. I meet lots of people in my work who do remarkable things every day, but they don't, they ignore themselves. They haven't made friends with themselves. So I encourage to you wake up to what a remarkable person you are, to make friends with yourself. Ordinary everyday community places. We have to help drop down some of the things that segregate and separate people with disabilities. It would be a good work. Another strategy for supporting people is to build relationships and tell the person's story. Every person who I ever met has a remarkable story to tell. Often, though, the way professionals tell the story of people who experience disabilities, they tell it through labels and what people used to call clinical accusations. They say things like the pregnancy was normal but the child experienced disabilities and the child was institutionalized. We know nothing about what happened to the child for 30 or 40 years, and now they are in our server system. Often professionals, what they know about an individual is what they know about the individual since that individual began to get services and supports from their particular agency. But there are huge gaps in the person's story. It's really critical to learn what the person's story is and learn how to tell it in a way you'd want your story told and the way I'd want my story told, not the story of someone who bites or someone who has a label, but the story of someone who might have survived institutionalization, someone who was cut off from his mother and father and brothers and sisters at an early age. There are remarkable stories of people who have survived horrible histories that need to be told. A big part of the problem for many people is the way the introduction is made. Learn to tell the story, learn how to make an introduction for a person to other people in the way that you'd want your own story told. A big part of this is staff orientation. If you work in a setting where caregivers are coming in a person's life, learn how to tell the story properly so that staff will learn what the real story is before they begin their work. It can be part of the interviewing process. However you do it, learn to tell it in a way that is respectful. Another strategy is to help, particularly for some people who start out not having much of any friends, particularly for people who have very difficult behaviors, one of the first things you can do is help the person find a champion. A champion is someone who comes to know the person but has no vested interest in fixing them, rehabilitating them or changing them. In a public school, a champion might be a teacher or adult in the building who has no real responsibility for the child in terms of teaching them or disciplining them about anything, who meets them at the front door, greets them every day, and communicates in one way or another. It's really important if people are going to get well and have no connections to others that someone make the first move, someone take the first step. A champion can be powerful medicine for someone who is all alone. A champion does not have any responsibility for rehabilitating or fixing the person but they can have enormous insight into what a person's behaviors might mean and what the next steps might look like for helping the person get connected to others. A champion is someone who greets you at the door, someone who sees your goodness perhaps at a time in your life when no one else in the world can see your goodness. Another strategy for helping people to develop relationships. Make a list of the things the person loves. Find others who love the same things. Remember, nothing guarantees that relationships will happen between a person and others. Nothing can guarantee it. We can't make people care about other people. A powerful strategy is to make a list of things that a person loves and help a person to find people in the broader community who love the same things. I met a woman named Patty. And you might say Patty is obsessed by coffee. She drinks it anywhere she can get it. When I met her, she had a red mark on her chin and across her chest from having burned herself on a hot pot of coffee that she tried to wrestle away from a staff person's arms in the kitchen. Patty loves coffee. She would go and drink cups of coffee with cigarette butts in them. I'm obsessed with coffee. And when I first met Patty, I wanted to have a cup of that coffee she got at the group home. I thought it must be good coffee, but it was horrible. It tasted like brown water. I said Patty, you need to go to Starbucks. One of the staff people thought it was a day program. But another person lighted up like a Christmas tree. She said that is wonderful. There is one on Milwaukee Avenue. There are other types of coffee. My point is that that is the person you want to go with Patty to Starbucks. Someone that lights up with a Christmas tree. It turns out that when people get together with people who love the same thing, the probability of relationships goes up dramatically. Now Patty goes to her Starbucks on a regular basis. They know what she wants to order there. She sits in the big comfortable leather chairs, and eves drops into other people's conversations like everyone else at Starbucks does. The point is, it started with something she loves and they went out into the broader community to find people who love the same thing. Patty also loves trains. She lives in Philadelphia. There is a train museum in Philadelphia. She goes there on a regular basis. She formed a good relationship with the curator in the museum. The point is, she loves trains, he loves trains. Showing up in the same places again and again, greatly increases the possibility of relationships. Finally, I want to say that one of the most powerful ways I have learned to help people to develop relationships is to help them to make a contribution to others. Probably the least amount of difference between a child who experiences disabilities and hers or his typically developing peers appears on the day when they are born, when they are babies in the hospital. But then we begin to separate the child who experiences disabilities often to increasingly separate experiences and he or she gets more different with every passing day. We have intervention programs that show up within the first 24 hours of a child's birth. While there is a lot of virtue to those services and supports, there is also a down side. The down side for me is that we are inadvertently conveying to parents that if you don't worry about our service system, your child will drop-off the face of the earth. And with every word we speak, the child gets more and more needy. When the child gets into early intervention and special education programs, the basic paradigm is what is wrong with you, how do we fix you and what do we do with you if we can't fix you? They go through years of IEPs that are about their limitations and deficits. They become the projects at school for other children who want to learn about special education. You know, the children who are getting extra credit in their social studies class. And then, if they are lucky, they get on a waiting list to get in the adult service world and they are put on the IHP, the IPP, and it's about the three fundamental question, what is wrong with you, how do we fix you, what do we do with you if we can't fix you. It's very hard to escape the gravity of all of that without feeling at the end that you are needy, and many people who experienced our service system for a long period of time, what they learned is that they are the needy ones. And this he know very little about the -- about the lesser -- about the reciprocity in relationships. They don't know about making contributions to others. We were expected as long as we could to be helping out with things around the house when I grew up. So I always tell parents of children who experience disabilities, make sure your kid helps out with chores around the house like all of your other kids. One mom said, well, what about my boys, he has seizures, I said well, when he gets up from the seizure, have him put out the trash. The point is, it's not just are the brothers and sisters good to him? It's is he a good sibling to them? The point is, is he a good nephew, neighbor, daughter or son? I mean people haven't learned this other the years, and one of the best things you can do to support someone who is lonely is to teach them about reciprocity in relationships. It's things as simple as remembering people's birthdays and anniversaries. One woman I met said her sister wouldn't visit her anymore. And I asked why? She said her sister just gave birth to a baby. You ought to make her a chicken pie. Go help her with her laundry. Where is it written that your sister should be doing things for you every minute? In short, get off the disability dime. Help people make a contribution to others. One of the most powerful things about supported employment is that people are making a meaningful contribution to their workplaces. It's one of the reasons why it's often a powerful way for people to get connected to meaningful and enduring relationships. When people believe that relationships are just about satisfying their own needs, then chances are good someone will become their friend for a period of time, but that over time they are going to be more and more tired of a one way relationship and it will fall apart. So, any advice you can give your friend, the person you know, about making a contribution to others will be good advice. Remember, it took years, years to learn these skills. I'm not sure I have them yet. But the bottom line is it took years and lots of practice. And so it will take time for the person you know who might not have had much practice to gain that practice, too. In closing, I just want to say that I believe there are a lot of things, ordinary every day things, that people need. People need to have meaningful lives. They need to have fun and joy in their life. They need to have a sense of power in their lives and good healthcare and an adequate income. But I believe that the fundamental root of most people's suffering is loneliness and isolation. I believe it's time for our field to wake up to the idea that relationships make all the difference in the world. If people are to be successful, if people are to get well, in fact the only time people ever are successful, the only time they ever do really get well is when they have formed a meaningful connection with others. Thank you very much for your time. And I look forward to hearing from you later on the e-mail part of the day.