Chapter 1: Conversation with Laurie and Pam

Lisa: Good morning. My name is Lisa Sonneborn and I am conducting an interview with Pam Abbott and Laurie Scoggins in Pam's home in Chester County, Pennsylvania, and also present is our videographer Lindsey Martin. So Laurie and Pam, do I have your permission to start our interview?

Pam: Is that okay to start Laurie?

Laurie: Yes.

Lisa: Thank you, thank you. Well, the first thing I wanted to ask was if each of you could tell me your names? And we can start with Pam.

Pam: My name is Pam Abbott.

Lisa: [To Laurie] and what is your name?

Pam: [To Laurie] Laurie what's your name?

Laurie: [Speaking......]

Pam: Yea we are the movie. Are you gonna tell Lisa your name?

Laurie: Yea.

Pam: Go ahead tell her your name.

[Silence]

Pam: Laurie...Scoggins...

Laurie: Yea.

Pam: Is that your name?

Laurie: Yea.

Pam: Yea, well you tell Lisa. Can you tell Lisa your name?

[Silence]

Pam: Laurie Scoggins.

Laurie: Yea.

Pam: Are you being shy? Yea

Lisa: Laurie and Pam I wonder if you can tell me what is your relationship? Laurie who is this person sitting next to you?

Laurie: (01:01:31:09-01:03:36:05) [Speaking]

Lisa: We are making a movie that's a camera that will help us make a movie, yea. Who is this person sitting next to you Laurie?

Pam: Who am I? Are you my sister?

Laurie: Yea.

Pam: Yeahh. We're sisters.

Laurie: [Speaking...]

Pam: No, we're sisters. Right?

Laurie: [Speaking...]

Pam: That's right.

Lisa: Who is the big sister?

[Pause]

Pam: Laurie? Are you my big sister?

Laurie: Yeah.

Pam: Yeah. You were born first? Then I came along? Yeah.

[Pause]

Lisa: Laurie, I'm wondering if you could tell me a little bit about your sister Pam. Is your sister special to you?

Pam: (01:02:36:42-) Laurie, what do you like to do with me? What do we do together?

[Pause]

Pam: You visit me. We go out to eat. You come here for holidays. You stay overnight.

Laurie: Yeah.

Pam: We have snacks, right? We go to parties.

Laurie: Aw, yeah.

Pam: Yeah? Cookouts, right? You like cookouts. You like to come over and sing, right? You played your guitar a little bit ago, singing all kinds of songs.

[Pause]

Pam: It's ok.

Lisa: Would you like to take a little break?

Stop Camera

Laurie: (01:00:03:15-01:00:19:05) Are we going to the movies over there at the mall?

Pam: Yeah we can go sometime.

Laurie: Okay.

Pam: Yeah what do you want to go see?

Laurie: I don't know.

Pam: You're not sure?

Laurie: No.

Pam: Something with singing and dancing?

Laurie: Yeah.

Pam: Yeah?

Lisa: Laurie do you have a favorite movie? I heard you singing some songs today what movie were they from? What movie is that song (Adelveis) from? Do you remember?

Pam: (01:00:31:25-01:01:00:09) What's your favorite movie? With Julie Andrews and all the kids...

Laurie: When we going to Rosehill, to see the kids?

Pam: Oh. Well, maybe next month.

Laurie: Oh next month.

Pam: Yeah. Go back to Rose Hill where she used to live, to see her friends. Yeah we go back and see your friends, don't we?

Laurie: Yeah.

Lisa: Where do you live now Laurie?

Pam: (01:01:05:15-01:01:34:08) Where do you live?

Laurie: Oh boy.

Pam: Where's your house? Where do you live?

Laurie: My house.

Pam: Yeah, and where is your house what town is your house? Pottstown?

Laurie: Yeah.

Pam: Yeah. You're coming up on a year, you've lived there for almost a whole year. Yeah.

Lisa: Do you like your house Laurie?

Laurie: How come I've got this on?

Lisa: What does your bedroom look like? Did you decorate it just as you wanted?

Laurie: How come I've got this (mic) on?

Pam: So people can hear you. Yeah- do you want to tell Lisa about your house, your new house?

Laurie: Yeah.I want to take it (mic) off.

Pam: No we need that on just for a little bit. So Laurie, you live in Pottstown, right? And you live with some other ladies... Who do you live with what's the name of your housemates?

Laurie: I don't know.

Pam: You don't know.

Laurie: I have to take it (mic) off.

Pam: It's not bothering you is it?

Laurie: No. When do we take it (mic) off? When?

Pam: When?

Laurie: Yeah.

Pam: In a little bit, when we're done talking.

Lisa: Is that okay just for a few more minutes to wear while we're talking?

Pam: See I have one too, did you see mine? It's just so that everybody can hear you.

Lisa: So what kinds of things do you like to do at home Laurie- in your new house? What do you like to do?

Laurie: (01:02:58:21-3:05:00:01) Fiddles with mic. I don't want it (mic) on me.

Pam: (01:00:08:13-01:01:00:07) [Talking to Laurie]

Pam: We're just gonna be a few more minutes. But I need for you to tell Lisa, when she asks you a question you need to tell her what your favorite movie is or about your house. Ok? Don't be shy.

Laurie: I won't.

Pam: Ok, because we want to hear your story. (Laurie hugs Pam) We want to know about you, and so do other people. "cause you have a good story.

Laurie: Yeah.

Pam: Yeah.

Laurie kisses Pam

Pam: You do, I want you to tell your story. Allright?

Laurie: Yeah

Pam: So don't be shy!

Sisters cuddle

Pam: ok? And I'll help you.

Laurie: Yeah

Pam: I'll help you tell your story.

Laurie: Yeah.

Pam: Allright, good. And then we'll go out for lunch.

Laurie: Yeah, we can.

Pam: Ok.

Lisa: So Laurie we were talking a little bit about your house, do you like your house?

Laurie: (01:01:04:05-01:01:10:01) I like spaghetti

Pam: Yeah that's your favorite, isn't it?

Laurie: Yeah, I like spaghetti all the time.

Pam: Yeah

Lisa: Do you make spaghetti in your kitchen?

Laurie: Yeah

Pam: Yeah

Lisa: Do you have friends that live with you in your house Laurie?

Laurie: (01:01:26:00-01:02:27:00) What time is it?

Pam: Its, I don't know, lets see; It's about twenty of eleven.

Laurie: Yeah

Pam: But, let's talk about your house- your house in Pottstown.

Laurie: [Nods no]

Pam: [Laughing] Tell me about your house in Pottstown Laurie, do you like your new house?

Laurie: [Nods yes]

Pam: Yeah? Do you like having your own room?

Laurie: No

Pam: Yes you do. You like having your own room. What do you do, what do you like to do in your room?

[Pause]

Pam: Do you do your pegs?

Laurie: Oh yeah.

Pam: Do you want to tell Lisa?

Laurie: I know her.

Pam: Yeah tell Lisa about your TV and your pegs.

Laurie: (01:02:27:10-01:02:50:25) Yeah. Sometime I do.

Pam: Sometimes you do. Like after work when you get back from work.

Laurie: Yeah.

Pam: Do you like going to work? Yeah? What do you do at work?

[Pause]

Pam: What do you do at work?

Laurie: I make things.

Pam: Yeah, do you make things? Yeah? Do you get paid?

Laurie: I got check money.

Pam: You got check money.

Laurie: (Name) gave it to me.

Pam: Mmm hmm.

Lisa: What do you do when you get your check money, Laurie?

Pam: Do you give me your check? Do you give me your check?

Laurie: (01:03:00:12-01:03:22:03) Yeah.

Pam: Yeah and then we go to the bank.

Laurie: Yeah.

Pam: What do you do?

Laurie: I don't know.

Pam: I give you your check back.

Laurie: Yeah.

Pam: Yeah. We go up to see the lady, the teller...And then you get your money...

Laurie: Yeah.

Lisa: What kinds of things do you like to buy with your money, do you like to go places or buy special things?

Laurie nods yes

Lisa: What kinds of things- where do you like to go? What kinds of things do you like to do?

[Pause]

Lisa: I know you like the movies. Have you seen any good movies lately?

(01:04:00:00-01:04:29:29)

Pam: Hey Laurie. What do you want to do?

Laurie: (01:00:04:00-01:00:52:09) I want to go with you. I want to go to the movies/

Pam: Yeah you want to go to the movies with me?

Laurie: Yeah

Pam: Okay. What movie do you want to go see?

Laurie: I don't know.

Pam: Just any movie? Any movie okay?

Laurie: Yeah

Pam: Okay and what do you want to eat when we get there?

Laurie: I like spaghetti.

Pam: Spaghetti at the movies? No...

Laurie: No! At the diner.

Pam: At the diner. Yeah which diner do you want to go to? Which one? Limerick? Pottstown?

Laurie: Yeah.

Pam: That one? Pottstown? Okay, so we'll do that later okay. So do you remember when we moved your things into your new house? Do you remember that?

Laurie: I don't know

Pam: It was about a year ago and you moved from ----to your new house.

Laurie: (01:01:17:10-01:01:56:00) Yeah.

Pam: Yeah. That was a big change wasn't it? Do you like your new house?

Laurie: Yeah.

Pam: Yeah? Who works at your house?

Laurie: I don't know.

Pam: You don't know?

Laurie: No.

Pam: Marcus. Do you like Marcus?

Laurie: No.

Pam: No? Okay. You have three ladies you live with: Joan and Theresa and... Ruth.

[Pause]

Pam: Yeah. Are you my big sister?

Laurie: (01:02:02:10-01:02:14:07) Yeah.

Pam: Yeah. Do you help me? Do you take care of me? Yeah we take care of each other?

Laurie: [Nods]

Pam: Yeah. Sometimes. You were in my wedding weren't you? Do you remember what you wore?

Laurie: (01:02:00:21-01:02:53:00) You, me and Kevin.

Pam: That's right. You, me, and Kevin and you were my bridesmaid. You had that pretty pink dress on- do you remember that? And the pink hat? And you came down the steps holding the flowers?

Laurie: Yeah. [To Lisa] I like you.

Lisa: I like you too.

Laurie: I like her [To Pam] she's my sister.

Pam: That's right. We're sisters.

[Pause]

Pam: So, how about work. Do you want to tell me about work? I know that you didn't want to take the day off today.

Laurie: (01:02:53:30-01:03:49:10) I did. I did have the day off, I did.

Pam: Okay. That's today, right? Are you going to work tomorrow?

Laurie: Yeah.

Pam: Yeah because you like it at work, don't you? Yeah. And you like the people you work with. You do a good job. And you get paid money, right?

[Pause]

Pam: Yeah we were just counting your money yesterday, you had all these quarters that-

Laurie: [Yawning]

Pam: You're getting tired? You okay?

Laurie: Yeah.

Pam: Do you need some water?

Laurie: No.

Pam: Okay. Alright.

[Pause]

Lisa: Laurie is there anything else you would like to tell us about your sister?

[Pause]

Lisa: Is she a pretty good sister?

Pam: Are you nervous? With that big light, does that make you nervous, sitting here? Its allright, its ok.

Lisa: I think you did a great job Laurie. Would you like us to continue talking or would you like us to stop for awhile?

Pam: Are you done?

Laurie: Yeah, I'm done.

Pam: Ok. If you want to come back, 'cause I'm going to stay and talk, if you want to come back you can come back, ok?

Laurie nods yes.

Chapter 2: Pam Remembers her Childhood

Lisa: Firstly Pam thank you very much for interviewing Laurie it was really great to watch the two of you together, thanks again for doing that. And now that we're together I thought that we could start by talking a little bit about your own childhood and specifically I wonder if you could tell me a little bit about your parents.

Pam: (01:00:25:00-01:01:19:23) My mom and dad were Roy and Edna Scoggins and they married late in life- well actually it was a big family secret- my mother was 8 years older than my father but they met and work and my father was a computer engineer for IBM and my mother was a computer tabulator or- they don't even have that job anymore but anyway they met at work and fell in love. Got married in 1954 and then I guess my mom was 36 I think when they had their first child who was my sister Laurie.

Lisa: And, when Laurie was born she did have- Laurie has a disability so I wondered if you could tell us what her disability is and as much as you can recall given that you weren't there as the younger sister but as much as you know from the conversation your own family- what their response was having a child with a disability.

Pam: (01:01:43:08-01:05:12:11) Well Laurie was born in 1956 and she was diagnosed almost immediately with having down syndrome and she also had other health conditions which included having an enlarged heart, under-developed lungs, she had fluid on the brain. They termed her a 'blue baby' because when she was delivered by C-section the chord was wrapped around her neck and her head had been wedged up under my mother's ribs. So the prognosis was not good- my parents were told immediately that they did not expect Laurie to survive and so my parents were quite devastated. They didn't know at the time of course to expect a child that was going to be born with down syndrome and given the time of- given the fact that it was in the late 50's it was a very, very dark time. No celebrations, a lot of tears. Sadness. And the doctor gave Laurie to my mother right away which she told me was something they didn't typically do back then but because they thought she was going to die they wanted my mother to be able to hold her and so she did. And mom was in the hospital for a couple weeks recovering and she told me that it was very hard to be around other mothers who were so happy and she was so sad. And my father, he was very sad- actually that's when he started smoking cigarettes I was told. Laurie stayed in the hospital for about a month and during that time my parents were advised by the doctor that they should actually place her in an institution that quickly. That it would be better for everyone and of course they didn't they brought her home and the remarkable thing is that by the end of that months time that all of her medical conditions had resolved. She hadn't received any specific treatments for her heart, lungs, or the fluid on the brain it was just that she came home and her only problem at that point was, or perceived problem was the Down Syndrome diagnosis.

Lisa: Pam you said that Laurie didn't receive any particular interventions for her health was that because they weren't available? Or was there a different perception about treating or not treating?

Pam: (01:05:26:05-01:05:59:06) I don't think anything was withheld because of her having Down Syndrome; I just think that at that time that I guess doing shunts or you know doing any special interventions just wasn't available. And you know had she been born 20 years later she may have had a complete- well I'm sure she may have had a completely different medical treatment course.

Lisa: Pam while she was in the hospital with your mother you said she was in for quite some time- were there any other supports offered to your mother- were there any counselors or spiritual advisors or anyone who helped support your parents through that very difficult time?

Pam: (01:06:17:12-01:08:13:16) No. They- well actually, you know they turned to their friends and their friends were sympathetic and I guess tried to be encouraging but at that time there weren't social workers or people who were on staff at the hospital who would come in and there certainly weren't outside support groups who would come in. So, no they pretty much only had themselves. They were preparing for Laurie's death and so they did turn to my mother's minister and had asked to have Laurie baptized and what I was told is that the minister said that he wouldn't baptize a mongoloid idiot. Those were the words he used and so at that time my parents separated from the church and growing up we were not raised in the church. I mean it was never prohibited- we could certainly go to church if we wanted to but it was not something they wanted us to grow up in. They felt very abandoned and very angry and I think my mother- especially my mother- was very angry at God, period. And then to have one of God's servants just treat them so badly. That was kind of the last straw.

[Pause] Crew chatter

Lisa: So, I wanted to ask you Pam a little bit about your own childhood experiences with

Laurie. Firstly, how big of a age difference is there between you and Laurie?

Pam: (01:08:45:01-01:11:13:00) We're 15 months apart. I came along- I kind of- unexpectedly in a way because my parents had talked about having another child and my father really was afraid to have another child in case that child would have a disability...My mother longed to have another child. So, I did come along 15 months later and I was checked out thoroughly in the hospital. Every finger and toe counted and she just you know- she found a little strawberry birthmark near my one ear and she pointed it out to the doctor like "look! An imperfection" and he said don't worry it'll fade but they were immediately struck by the difference between Laurie and I. Laurie, when she was born and after didn't turn to look at people if they came in the room and she didn't seem to be as aware of her environment where I was looking all over the place immediately and I was very connected to anything that was going on. And so they started comparing and I think that brought the reality of the situation to the surface for them. I think- I remember them telling me that my mother just wanted to pretend that Laurie was a little china doll and I think she treated her like a little china doll for a while but it got harder and harder as we grew up for my mother to keep denying that Laurie wasn't learning as quickly and that I was surpassing Laurie developmentally.

Lisa: Your parents obviously would be attuned to the developmental differences but as a child did you perceive Laurie as being different from yourself?

Pam: (01:11:24:00-01:12:30:18) No not for a while. I just looked at Laurie as either someone who was fun to play with or someone that was making me mad because she was taking my toys. And we had fun I mean I have great memories of playing down in the basement. We had swings in the basement I remember us playing hide and seek and hiding in this great big toy box that we had and it was a linoleum floor so we would put our roller-skates on and roll round and round and we both loved music so even our little tiny 45- the kiddie music we would play. And you know dolls and so forth. And then there came a time where I started to realize I could manipulate her and I knew how to get the toy I wanted and I would trick her.

(01:00:27:03-01:00:59:00) Laurie opens door. Talks with Pam. Everyone laughs.

Lisa: So Pam I'll go back for a minute you were saying that as you got a little bit older you learned, like probably many siblings do, that you could manipulate your sister into getting the things- the toys you wanted or things that you wanted.

Pam: (01:01:16:14-01:03:59:20) Yes so they are the in the house happy memories of what I think was probably typical sibling interactions- it was outside the house that was hard. The children- the neighborhood children- they recognized that Laurie was different and they made fun of Laurie. They- they would call her names and they would say things like your sister's a retard, your sister's retarded and Laurie at the time had certain gestures that she did and she would make different kinds of sounds and the children would egg her on and make fun of her and she didn't realize that they were making fun of her but I did. And Laurie just wanted to be part of the little group and so the more they teased her the more she responded by doing things that they could laugh at her. She thought they were laughing with her and I knew they weren't. I mean I knew that they were ridiculing her and so inside our house we were sisters and outside the house I- as I matured and got older became more of her protector and really her advocate from a very young age- talking to children about just basic empathy like how would you feel if someone made fun of you or somebody called you names. Well she feels that- just trying to help them understand from her perspective or just what was nice and what wasn't nice, and what was right and what was wrong.

Lisa: Pam that's something that's probably easier for an older child to do but I know from talking to you before that there was a particular incident when you were younger and perhaps not as able to advocate for Laurie. It had a significant impact on Laurie and your family, your family as a whole. An incident involving some neighborhood boys and I wonder if your comfortable sharing that story with us.

Pam: (01:04:27:27-01:13:35:28) Yeah. It was really the turning point in our family. It was an incident that occurred in our backyard. We lived in a twin house and so our twin of our twin house had a chain-link fence that separated the backyards and I was playing with the little girl who lived next to us on the one side and Laurie was in our backyard playing on the swing with her doll and a group of neighborhood boys, little boys, came around and Laurie was in her own little world talking and making sounds and so forth and they started to gather around at the fence and they started to call out her name. "Laurie...Laurie come here. Come here retard, come here." And Laurie, again, she just was playing and the one little boy picked up a rock and threw it at her and then the other little boys started to pick up rocks and hurl them over the fence at her and she just started running from side to side of the yard trying to escape the rocks and I just remember being crouched down holding onto the fence watching this happen and I don't even remember at this point if I can to get my mother, if I was yelling at them to stop. I don't remember that but I just remember watching it happen and when I left the rocks hit Laurie right in the middle of her forehead and knocked her down to the ground and she just lay there and didn't move and she was bleeding. [Pause]. And after that my mother just picked her up and carried her from house to house for all the neighborhood boys crying look what your son did to my baby and that was- I think that's when my parents seriously started to look at placement for Laurie because they didn't feel that there was any place safe for her at home that she couldn't even play out in her own backyard by herself and be safe and my mother couldn't be with her all the time and I- even at four years old- this happened when she was five and I was four. Even at four years old I was already, you know, pretty free for a four year old out there playing and I was playing solely with Laurie and so they thought- they thought that they needed to find a place where there would be other children that she could play with where there would be people who wouldn't hurt her or make fun of her and there did become an opening at Ebensburg State Hospital I think they called it at the time. This was 1962 and they made the very, very painful decision of placing their five year old. I guess it was a five hour trip to get there. There weren't any other places closer that were open that had a place for her and so they did. They took her to Ebensburg one day and took me to the neighbors to spend the night and I didn't know she was going and when I came back the next day my mother was just laying her head on the kitchen table sobbing- just violently sobbing "they took my baby, they took my baby" and my father was very- I just remember him standing over trying to comfort her and I just remember feeling so upset because my mother was so upset and I was trying to figure out where is the baby what baby because I didn't think of Laurie as the baby. But I think it was later that day that they told me that Laurie was in a school and that she wouldn't be coming home and that set the tone of my childhood really and for Laurie it meant being put in a netted crib in a ward not being able to see her family for thirty days. It meant totally losing everything that a little five year old...We did get to go see her when they finally let us about a month and we met at a motel across from the institution and it was a very sad visit. My father brought Laurie over to the hotel and I just remember being in the bathroom with my mother as my mother was taking a diaper off of Laurie. My mother was very upset because Laurie had been toilet trained before she went to Evansburg and my mother was upset that they had her in diapers but she was restricted you know in a netted crib she couldn't get out to go to the bathroom so she regressed in her skill. But she hadn't really been speaking in sentences before she went to Ebansburg and she did speak a sentence and she said Laurie bad girl and she hit her hand and so our thought was that she thought she was bad and that's why she was sent away. Maybe everybody read into that I don't know. She had a very bowl cut style haircut and it was a short visit I think we were there for the weekend and I remember my dad taking us to a local store to buy those big plastic balls to play with and you know we had our time and then it was time to take her back and I just cried and cried and cried because I don't think I realized that Laurie was going back. I thought- I don't know what I thought but I think it was very hard. I don't remember if Laurie cried or not. I don't remember Laurie's reaction to being taken back there.

Lisa: Did your parents explain to you, Pam, even at that point why they had taken her there and why they were taking her back?

Pam: (01:13:42:20-01:14:45) They said that this would be good for Laurie that she- they would teach her things that they couldn't teach her and that Laurie would have friends and that it would be a good thing for her. But even then- even then I knew from them that you know I could see how upset they were. I could see how- I probably didn't have the words then to describe what I was feeling from them but the depression and the sadness were very overwhelming. It was a very sad house.

Lisa: I've heard other siblings of people with disabilities who have had similar experiences. Their children- their sibling being sent to institutions to live or places outside of the home to live. Feeling concerned or insecure that perhaps they would be sent away I wonder if those were ever feelings or concerns that you had when you were so young?

Pam: (01:15:10:07-01:15:40:10) I fixated on that. I thought a lot about what was happening to Laurie- where she was what if she you know needed something what if she was cold and I think I put her in her place a lot I don't think I was so concerned about my mom and dad

Lisa: You talked a little bit about feeling like you were fixating on Laurie's experience and if you don't mind repeating what you said that would be helpful.

Pam: (01:16:38:22-01:18:25:11) I worried about Laurie I worried about because she didn't have a mom and a dad where she was- who was taking care of her if she needed something if she was cold if something hurt you know would they take care of her and I didn't worry so much about my parents sending me away... but I think I developed early anxiety and I didn't know what it was but I used to get in my closet and just close the door and cry and I didn't know why I was crying.

[Pause]

Pam: I...I missed her and I was scared for her and I started rocking and I started wetting the bed and I have, I think, I had what they called- if anybody paid attention I think I had childhood depression and some post-traumatic things going on and...

Lisa: Were your parents able to respond to your needs or were they just too wrapped up in their own grief?

Pam: (01:18:39:01-01:20:43:02) They thought that I was attention getting because their focus was on Laurie and they thought that I was trying to get all of their attention by doing bed-wetting and you know just some of the things that I did and they- I think they were too hurt. They were too much in pain themselves to really be able to deal with my pain or my anger because I was very angry too but I didn't know why I was angry so they didn't know. They didn't- I don't think they connected it with what was going on. They responded to me as a child with emotional problems but they didn't get me any help. I begged when I got old enough I begged them to please send me to a psychologist and they told me they didn't have the money but I knew something wasn't right with me I always knew that. And I knew I had a lot of pain and I knew I was... I knew that I...that I wasn't like other kids. I knew that.

Lisa: You described your household as feeling sad did your parents regret the decision to take Laurie to Ebensburg and did they try to do anything to change the situation?

Pam: (01:20:54:26-01:23:27:17) Well they tried to visit her- do some more visits and they were denied. The superintendent at the time said that Laurie wasn't adjusting well and that it was too soon and then my parents wanted to bring her home on vacation and that request was denied. And then looking at some of the correspondence from that time my parents had requested an investigation and reading between the lines it looked like it was out of her concern for her regression and the response was that she was- they admitted that she has had skill regression but it was all part of the adjustment period. So after four months my parents got in the car. Drove up, picked her up out of her crib and took her home they said that people were actually running after them telling them you cant do that you cant take her and they just kept going and they drove home and Laurie was home and I remember just being so happy. My sister's home- life is good- you know feeling like everything was going to be okay and then I found out she was going to go away again and this time she was going to a children's program that was about 45 minutes away so I did get to see her every other weekend but I remember feeling like the high of Laurie's home and everything's okay and the why does she have to go away. I remember- I can see myself in our living room saying daddy why.

Lisa: Why did they send her away again after all of the stress and the sadness that they experienced when she was gone?

Pam: (01:23:36:05-01:25:21:03) Because she was I guess she turned six by this point or was going- let's see I'm trying to think of the time period. The basic reason was that I think my parents were being told by doctors and probably other people that Laurie needed a residential placement to get the schooling that was not available to her there were no community services there was nothing. The only option they had for her to have any kind of education was in a residential placement and so they were kind of forced. I'm certain that if the times had been different and they were able to get some help in the home and if she could have gone to public school like me they would have never sent her away. My mother did have a lot of emotional problems and with Laurie's birth she started drinking and that played a big part in all of our lives but I really think that had my mother gotten any kind of help or support then my life would have been very different for all of us.

Lisa: Pam you said that Laurie went back every weekend which seems incredible difficult for all of you that re-entry week after week after week. I wondered if you could tell me a little bit about what it was like when she came home versus what it was like when she would return home on a Sunday?

Pam: (01:25:40:05-01:28:38:03) Dad used to pick Laurie up right after work on Friday nights and bring her home and we would have pizza or something fun to eat and then the weekend was just- fun it was bike riding and it was play and it was you know just normal and then Sunday would come- Sunday at 3 and that was always- that was the time where it got quiet. My father would be more into himself and more irritable and I just felt the sadness of Laurie's going back but I usually went with him and Laurie and the rides taking her back were singing to Gary Puckett and the Union Gap and taking her back and Laurie I give Laurie so much credit. Laurie is such a strong person whatever situation Laurie is- about herself she's always done it so incredible well and even going back she was strong and she didn't cry. She would hug us and say see you in two weeks, she accepted it and the hard ride was the ride home for me and dad. It was so sad every time we had to leave her it just ate at him and I remember one ride he told me that he thought about just taking Laurie in the car and driving into a tree and killing himself and her at the same time. [Pause] and that...that's always... been such a hard memory.

Lisa: You were afraid as you were a young girl in the car were you afraid that he would do it that you would lose these two dear people?

Pam: (01:28:53:25-01:31:26:00) [Emotionally shaking head] Umhm. There was a song on that was playing it was lazy day and it's a fun song but we had this conversation while this song was playing and I couldn't hear that song. Every time that song would play I would cry and even being an adult in the grocery store you know they pipe the music in and if that song came on I would just stop and freeze and it was everything I could do to just not run out of that store. But I always liked that song so it ruined that good song. I have to say though it was recently in the last couple years I made an oldies- my favorite oldies- and that was one of them and I put it on and Laurie and I were in the car and she likes the song too and I felt like here we were- adults and I'm here and she's here and we survived. And we survived to even this song. You know that was just a point of victory kind of in a weird way. I don't know if anyone can understand that but just having come through all the hard things that we did it was like we made it. We made it and we're here and we have each other and we will always have each other.

Lisa: So Pam I wanted to ask you about your father you were very young and Laurie was very young when you lost him perhaps you could tell me about that.

Pam: (01:00:32:13-01:05:51:22) Laurie was probably 17 and I was 15 a week from my 16th birthday and my father was supposed to be going on a business related training and it was a Monday and he had a heart attack and he died a couple days later. The people- the staff at where Laurie was living at the time were the ones to tell her so I don't know how she responded at being told but I remember the day of his funeral. We had gotten there early to go to his casket to have private family time and it's just seem like we were walking up this long aisle and we saw two people over at the casket and I didn't realize immediately that it was Laurie and one of her staff people and it was very hard for her to understand that daddy was gone and where heaven was and let's go into a car and go to heaven so we can see daddy. At family gatherings all of a sudden Laurie would just lay down and put her hands up just like she saw my father in the casket and she'd say my daddy's dead and this went on for a while and for years every time I saw her you know every time she came home you know she would cry for daddy and I think that's one of the reasons my mother decided to sell our house- our childhood house because whenever Laurie was home she would just walk around the house looking for daddy or waiting for him to come through the door or looking outside for his car. Laurie and daddy had a very close relationship he was much more accepting of her than my mother he adored her in fact I used to get jealous because we never went to dairy queen unless Laurie was home but she used to go over when he was sleeping on the couch and kiss him on the forehead and say I love you my little daddy and he just- so it was hard. It took- it was very devastating. My mother drank even more after my father died. We couldn't go to see Laurie because she didn't drive and I didn't have my license so there was a lot of pressure on me to get going with the driving and so the staff from where Laurie lived did bring her home but there were intervals of time and it wasn't long after that that Laurie aged out of the program where she was living and came home to live. She was home for about a year and mom couldn't cope with the 24 hour care and again there really wasn't anything for Laurie I mean she did go to school at a local school but the reports were that she would cry all day. She had been kind of uprooted out of her home of I don't know how many years it was but from age 7 to 18 and she had lost her friends the staff she loved and she was coming home to a very sad house I was a teenager I wasn't home and she was left with my mother who drank and had just terrible grief for my father it was just very hard.

Lisa: Pam this is happening at an age when most young women are preparing to sort of launch their own lives. For you I'm sure you had hopes and dreams of your own yet your mother was still struggling with Laurie struggling with her grief and asking you to take more responsibility for Laurie's well-being how did you balance those two things- your own desire your independent life and your increased responsibilities for your sister?

Pam: (01:06:00:00-01:07:26:09 Well...I guess you know I... I did what I had to do. I learned to drive I took of my mother and I took on the role of in a lot of ways of my father in the family. When my mother turned 60 she said to me she's yours, I'm too old for this and I was 20 I think I was 20 so Laurie became my responsibility.

Lisa: Did you ever consider saying no?

Pam: (01:07:26:25-01:08:42:07) No. No because I always- I've always felt protective of Laurie I've always loved her so much and I always felt I needed to protect her and I had a better understanding I guess than my mother did and it was always... well let's just say that it was okay with me.

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.