Chapter 3: Pam and Laurie as Adults

19:53:37:13 - Lisa: Pam, I wanted to ask you about your career. What do you do for a living?

Pam: Well, my education is as a social worker, and I've been a social worker since 1980. I currently work with a county agency who provides services for people with intellectual disabilities. And I'm a program specialist, but I started out as, right out of college as a case manager - now they call them support coordinators - and I worked for the county MHMR department as a plaintiff class case manager and my case load was primarily individuals who lived at Pennhurst. And my responsibility was to coordinate placements for those individuals into community living arrangements. So it was, it was, um, something that I never really anticipated that I was going to do, although people often think because I have a sister, that that's why I chose my career path. But I grew up with social workers in and out of my house all of my life, but that was not in my mind " oh, I want to grow up and be a social worker". It just kind of happened, you know, I think I was primed by my life's experience to gravitate that way, but I had a very strong role model in college who was a social worker, and just the idea of it was like "Oh I can do that - this is how you become a social worker, you go to school for it!". I always thought that I would work with children, and that I would work in adoption, but my senior field placement instructor, who was a real mentor for me, she said, "I think, I think you would be wonderful at this and she really encouraged me to take a case manager position. And I did. And I have to say that it was, it was as equally rewarding as it was emotionally painful. I could see the pain in my families as I would meet with them and talk with them about taking their child from Pennhurst and creating this community life for them. Because they felt they had that settled. That part of their life was settled, and I'm sure it was so immensely painful to do it in the first place, and then to take them from their 'home' and take them into a whole new world - it was very, very hard for families.

19:58:04:00 - 19:59:26:00 Lisa: Well, as both a sibling, Pam and as a social worker, I'm sure you understood some of the concerns parents had about the safety of their children in community.

Pam: Absolutely. Absolutely. There were, I mean, there were so many times when families would say they were afraid that no one would see what the staff were doing in those homes, that at least in the institution there were other people around who could, you know, repost if something happened that shouldn't be happening or that there were so many services in the institution and because they had nurses there, and physical therapists, and occupational therapists, and so forth. And that, you know, at the institution, their loved one could walk around, while in the community, you know, even if there's a back yard, they still didn't have that freedom. They saw freedom at the institution, versus a more restricted life in a small community setting.

19:59:26:01 Lisa: Pam, you were convinced that community life was right for Laurie, and she made that move fairly recently. Maybe you could tell me a little about that transition for her and for you.

Pam: Laurie lived, after she left the children's program and came home for a year, she went to live in another Private liscensed facility for the next 35 years. And my mother was alive at that time, when she went to live there and over the years, it always bothered me that Laurie did not have the many of the opportunities that I saw my clients having, in their community settings. Laurie didn't go to work, she didn't earn - didn't have the opportunity- to earn money. She didn't go out to community activities on a regular basis - she lived in a very sheltered world. And I just saw so many things that I wanted for her. I wanted her to have a real life. We go through this life once, at least that's my belief, and I thought, "I know she's settled, I know she's happy where she is", but I wanted more for her.

Lisa: Did she want it for herself?

Pam: No. She didn't want it for herself because she didn't know what she didn't have. And the opportunity did come along where there was funding for her to go into either life sharing or into a community living arrangement. And after carefully thinking about what would be best, I started exploring community living arrangements for her. I wanted so desperately to share her life. She lived over an hour away, and at best I could only get down to see her every three weeks, and, uh, even bringing her home for a holiday dinner meant a four hour trip in the car up and back, so a lot of times, what we did was go to a restaurant near where she lived, and that's not the same. So I started to look for a place close to me, so we could share our weekends together and so that I could just be there in a second or she could be here in a second. And I did find a place - she lives 6.7 miles. And the transition was probably as hard for me as it was for her, because I knew what I was asking of her, and I didn't have a way of explaining it to her that she understood. But a year ago, she moved into a house in Pottstown; she lives with three other ladies. And she has done just remarkably well. I mean she is really enjoying life. She is out - she's so social, she's just this social, outgoing person, and she loves to do things, and now she's just doing everything, and its really awesome. And those people closest to her have seen such a change in her confidence. When she comes here now, she'll just, you know - before she used to act like a guest when she came here, asking me what she should do. Now she just initiates, and she tells me what she's going to do, and I just love it - its wonderful.

20:05:29:05 - 20:09:40:04 Lisa: So Pam, I'm wondering if you can tell me about how you envision your future with Laurie?

Pam: well, I feel that we're on a journey together - we're both learning so much about each other. Even now, each time I'm with her its - there's a new revelation, there's something that I didn't know that I learn, and as she's growing in her life, and experiencing new things I get to see...I get to see, front seat, a Laurie that I would never have gotten to see had she not moved. And I hope that life permits us to grow old together and I hope that new opportunities keep coming for her, and that I can help her do what she wants to do. I've not ruled out anything for her, and her move was not the period at the end of the sentence. If there were to come some special person into her life, that she wanted to share a home with, I would fully support her. If she wants to stay where she is and feel secure and feel that that's her family home, I would support that too. You never know what life is going to bring you, and I can only know that, for the here and now, being able to be a greater part of her life, be able to be her sister and me her sister - hmm, did I say that right? I guess what I'm trying to say is that I lost my sister in many ways, a long time ago - she was taken from me. And she lost me, because she was taken from me, and now we have each other back. And that's what it feels like - I got my sister back after all these years. And I think that, although she can't verbalize it, maybe she can't process it that way, that being with her, and sharing our life together, and the way she responds, that it's the same for her too. I tried to tell her, I'm going to be closer to you Laurie, you're going to see me more, and she didn't get that. But yet everytime I talk to her on the phone, its like " When are you taking me out for lunch, when are we going out?" She expects that, she wants it, she wants to have a closer relationship, and she values it. I value it. And I just hope that we are able to grow old together, and weather the storms ahead together, and enjoy the wonderful things that come along together, just to be there with her, and to be sisters.

Lisa: Thank you Pam, I wish that for you, too. I wish you a long and happy life together.

Pam: Thank you.