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.