Chapter 2: Marriage and Family

Lisa: We're going to jump ahead a little bit, Nancy, and I wanted to ask you a little bit about your own family and if you married or had children.

Nancy: I'm married. I married in 1955 and Robbie was born two years later and Joanne was born two years later -- '55, '57, and '59. It's very easy to remember.

So yes.

12:22:13:10-12:25:28:04

Lisa: Can you tell me a little about your husband?

Nancy: He was a bit older than I am, and -- but we seemed to fit, and we both had the same crazy sense of humor, and we both enjoyed the same things when we were able to travel. Robbie, I think, was -- let's see, ten before we would take a trip, and we -- I'll never forget the first time we went to Italy and we had gone to Florence straight from the airport, and they took us on a tour, a little bit of a tour, because the luggage had to be taken off the bus and transferred to the rooms. We were in Michelangelo Park and it was about 5pm in the afternoon, and it was just so beautiful. You just stood there and just enjoyed everything, and we had that togetherness that we both loved beauty, and we didn't have to talk. We just fit together that way.

So whenever we could, we went to London one time on a Thanksgiving weekend, from Wednesday to Sunday, through Temple Alumni, went to Denmark that way, went to Greece that way. So my parents would come and sit for us. So we did all this, a week at a time. Each year was a week. So thank heavens for my parents.

12:25:28:04-12:27:40:29

Lisa: You mentioned that you have two daughters, Robin and Joanne. I wondered if you could tell me a little bit about them.

Nancy: Well, Robbie is the first born, and I was told that when she was born that she was -- perfectly normal, healthy baby, and the pediatrician at that time was a specialist, a blue baby specialist, and said, oh you Jewish mothers, the way you take care of your children, she'll grow up to be a very healthy baby. And it wasn't until about 18 months later that we were at the old Children's Hospital, looking for answers as to why she wasn't developing properly. And he happened to pass us in the hall, and asked why we were there, and we told them, and he said, well he wasn't surprised, it was obvious. So we had seen him when she was three months old, and he said, oh she's fine. So that was the beginning of looking for answers.

And she was a good baby, and we did get an answer. In those days you were diagnosed as either a Down syndrome or brain damage. They didn't know anything about any other syndromes, and we were told she was brain damaged. I still can picture my husband and I walking out of the neurosurgeon's office just crying, you know. Especially with your first born, you know, everything is -- even though I had a background of medical issues -- I was a medical technician -- and worked the hospital for five years.

But when you become pregnant and have your first child, you are innocent. You are very naive, and it was just so traumatic and cried for a long time. And then you set about looking for what can you do about it, and that was a long journey.

12:27:40:29-12:29:36:14

Lisa: Nancy, we'll certainly ask you about that journey today, but I'm curious about something you said. You said the pediatrician initially who saw Robin and said, oh you're a Jewish mother, she's fine, don't worry, later on at another meeting, said that her disability was obvious from the start.

Nancy: That something was wrong. Yeah.

Lisa: I wonder how you felt about --

Nancy: You feel betrayed. I said, why didn't you let us know then? Well, he thought it would be very hurtful. Well it's hurtful at any time, but at least you can be prepared. It's when things are not happening, when she's not sitting at eight and a half months without support, and -- but she looked fine. You know, with a little button nose and a rosebud mouth and curly hair, and just with such a sweet smile, and -- but however she went from sitting to standing -- nothing in between. She never crept and she never crawled, and that had to be taught later on, so with everything that goes along with as babies learn to creep and learn to crawl, there are other things that are going on developmentally, and we were not aware of that. It's unbelievable.

You're so naive when these things happen, and you don't know where to turn, because there's nobody to turn to. But we had a marvelous pediatrician, the second one, who was Chief of Pediatrics at Einstein Northern Hospital, and who worried about everything. And wherever we went looking for some help and we heard about things, he would call and raise the questions and find out how qualified they were in trying to help. So I'm most appreciative of that.

12:29:36:14-12:33:54:04

Lisa: Nancy, I'll certainly ask you more about your daughter, because certainly her disability changed the course of your life. But while we're talking about your children, I wondered if you could tell me a little bit about your daughter Joanne.

Nancy: Joanne, two years younger, and I used to say I had both ends of the spectrum. Robbie's was special needs and Joanne was at the other [end]. I didn't have an average child -- very, very bright, and that was it. She was quick in everything, understanding everything, and I always felt it was a shame that she didn't come first. She would have had two years of us unconditionally, without always having to be considered -- though I felt I could divide myself in half. That's why we didn't try for a third one, for the boy. It was up to us to have the boy in the family. He had two brothers, and they all had girls, and so it would have been up to us to have the son. And I would have liked to have a boy. But we thought that with two, you could cut yourself in half. With three, somebody would have suffered, and we didn't want to do that. And she's a delight, always as a little one, going to dance classes, five, and sending her to -- we believed in affording them all kinds of experiences to see what they enjoyed doing, you know -- ballet and art class and whatever else she was interested in, that kind of thing, to find out where her interests were. Very outgoing, and we lived in a neighborhood that had quite a few children that all went to the same elementary school, all went to the same Hebrew school, and so there was a group there. It was a very close group. So we're very, very good friends today, very, very good friends, and I have a delight in my granddaughter. So we've done the same thing with her. She went to see the Degas exhibit when she was seven months old, and so we've gone to the [Philadelphia] Art Museum ever since that time, and she has a little bit same weird taste of art that Joanne has -- Salvador Dali, what's her name, Frieda -- married to Diego Rivera.

Lisa: Frieda Kahlo.

Nancy: Yeah. And so they bought that, posters, and Arielle wanted the poster of the boot, and they had an argument who was going to have it. So I had a friend of mine who was going the last day of the exhibit. I said, please do me a favor, get me a poster of the boots.

So even when we just went to the Van Gogh exhibit -- what was it, the day after Easter Monday, whatever the date was, we went this time because she was off from school. And so she's been going quite often, whenever its special. And so it's going on. It's in the genes. It's been passed on from grandmother, by father, to me, to Joanne, and now to Arielle.

And Robbie loves music, and she does not like cartoons. She needs the human face, and I've taped a lot of the VHSes for her, of the Pavarotti concerts. She loves the concerts. The operas, she doesn't like. The concerts, she loves the classical concerts. So that's what she listens to. And I have one last tape now for her -- cassette tape. You can't find them anymore, and I'm trying to get somebody to get me some of the DVDs for her. She's an aficionado of Lawrence Welk, so we watch that every weekend, every Saturday and Sunday, he's on TV. So -- and she comes in, and she sits down on an ottoman and she has her ear plastered to the TV so she can watch. And she knows. So they do love music.

12:33:54:04-12:38:34:15

Lisa: Sounds like you have a wonderful group of women in your life.

Nancy: Oh yeah, oh yeah, very fortunate, really. You have no idea how I feel about that, the support system that I have -- very loving.

Lisa: Nancy, I'm wondering how your family reacted to Robin's disability once it was discovered.

Nancy: My parents were devastated, but certainly were there supporting us all the way through, and at a certain point, Robbie, we went to the Institute of The Human Potential. She was about ten. We were suggested to that by her neurosurgeon, and they always were there to "pattern". Whenever anybody -- you had to have volunteers to help. We were lucky, we did it as a three person team, and if somebody could not make it, especially on the weekend, then they were there, my father always, my father was always there. I don't know how I would have survived without them.

My husband's family was not interested -- they were concerned, but didn't do anything in any physical way or supportive way. You know, they'd say, I'm so sorry, that kind of thing, but never actually did anything for her or for us that way. His parents were dead, and he had siblings, but they weren't there.

The other extended family, my brother's wife did not accept her, did not like if Robbie walked near her. In fact, she once said to me that -- oh, Joanne must have been about five, and we were at my parents' house for religious holiday dinner, and what my brother -- I'm telling you things that perhaps should not be said. Apparently they discussed Joanne on their way home. What people discuss in their privacy, that's one thing, but my sister in law said to me, told me about it and said, well I only had one child. And I said, "I beg your pardon"? I said, "I have two children," I said, "don't ever forget it". And that was -- that was extremely hurtful. I never forgot it. I tried to forgive her for it, which I guess I eventually did, but I never forgot it, and I always have a -- that barrier there, you know. We tried to be a family.

There wasn't that many of us, but that's a hurt that doesn't go away, to pretend that -- because she said that Joanne was spoiled. They decided that Joanne was spoiled, and it was because I only have one child. I guess because we had tried to expose her to all kinds of everyday things, going to day camp, you know, for a week or two weeks, that kind of thing. She never wanted to go to overnight camp. And she learned the usual things -- canoeing and swimming and archery and horseback riding, which she loved. She used to go horseback riding in the far northeast, Taylor's Riding Academy.

Kids just were very welcoming, you know, for birthday parties and what have you, and that was it. We always had a group of kids here, at my house, and the children didn't see anything different. The neighbors accepted her, you know, which I shouldn't say accepted, but they realized that there was a situation there, and that was it. Some of them were the ones who helped me pattern her. And several people in particular were always available. If somebody disappointed me, I could call them, and they'd say, "oh well I'm cleaning the oven. Let me take off the gloves, I'll be right over". So I was very fortunate that way.

12:38:34:15-12:43:44:20

Lisa: Nancy, you've mentioned patterning a couple of times, and I will ask you a little bit about that in a few minutes, but firstly I wanted to ask you if caring for Robin at home was something that doctors or family encouraged you to do, or was it ever suggested that you shouldn't care for Robin at home?

Nancy: Oh yes, oh yes. When she was two, my husband had a practice around Wynnefield [PA], in that area, and I had gone to see a physician friend of his for I think a cold or something like that.

He was not my regular physician but I had a cold or something -- and he said, "Don't you think you should place her"? And I looked at him, and he said, "Well you're going to have to do it when she's 17 or 18 or 19, and it's very traumatic at that time, so you should do it now". And in those days, medical personnel always took off Wednesday and part of Saturday And he said, "you know, you can't go out on Wednesday nights or Wednesday, you can't go on a cruise, you can't [go] to the theater, you can't be spontaneous." And I didn't say anything to him. You know, I didn't say yes or no or anything. But on the way home, I said to my husband, I told him about it, and I said, "I can imagine myself on a ship, on a cruise, getting ready for the captain's dinner, looking in the mirror and saying, well you're here because you put a two year old in an institution", which was abhorrent to me. There's no way. This was our baby, this was our child. You don't place a child. Can you imagine placing a child, two years old, in an institution? She would have been dead a long time ago. Children can't live without love, they just die, the soul just dies. And it was totally unacceptable, unacceptable.

And then again, when she was about 14 and we were in a pilot classroom education at Longfellow School, and we didn't seem to be getting anywhere, and the neurosurgeon -- we had to see him every so often -- sent us to a psychologist at City Line Avenue, and they tested her, and they suggested that I place Robbie. And I said I wanted her to go to school and come home at the end of the day like everybody else There was a program already in Boston, Massachusetts, and I had said to them, they have a program in Boston, and the answer came back from the state -- no, not from the state. Partially I think from the state, [they said] can your husband afford to move to Boston? I said, well you're the professionals. You should be the ones providing the services that we need, and not tell me that -- move to Boston.

But right after that, a number of months later, when the Right to Education Act came about, we then went into our own school districts, and see, she went into public school in the Northeast [Philadelphia] -- and the principal there really did not want them either, but he got paid extra. He told this to my husband. So he tolerated them. It was a multiple handicap class.

So, you know, that was the second and last time that anybody ever suggested it to me. But the psychologist herself was trying to convince me to do it. She said because I wouldn't be so tired, there would be three eight hour shifts, so the aides that would come in there, into the institution, would be fresh and not tired. And so, you know, that kind of thing. And going home, I said to my husband, "Why do I have to defend myself that we want to keep Robbie home? She's our family, she's part of the family". Why do I have to give her away, and trash her is the way I look at it. It may be a little harsh, but at that time, I was very judgmental. I'm a little bit better now, as I've gotten older, but I couldn't imagine anybody placing a child into an institution, no matter what.

But I was fortunate with my husband and my family, my parents, and my sister, who was so wonderful when Joanne was born, the summer that she was born. She was at my house several times a week, helping out, and she was fifteen herself at that time. So that was the end of any thoughts of institutionalization. Except now it scares me, because last year, 12 people from the community went into a state institution. They call them Centers now, but they're institutions, and that's unforgivable, and I'm working against that.

12:43:44:20-12:48:09:01

Lisa: Nancy, I wonder if you can tell me a little bit about what Robin's needs were at home, what kind of care did you have to give her?

Nancy: Oh, when she was younger, when she was little? A great deal. Well, let me back up a little bit. Robbie was diagnosed with what caused her retardation about twenty years ago. It was through Einstein's genetic department, two staff people from PATH sent me brochures on it. It must have been comparatively new. And I took her over there, and her bloodwork was all negative, but it was skin biopsy that identified her diagnosis, which is Tyshler Pallister-- one more word [Killian] -- Syndrome. And probably happened at the time with conception, when the top of number 12 chromosome broke off and formed an extra chromosome. But the medical package is all the same. They're always incontinent. It's comparatively rare. I think she's probably one of the oldest in the world today, and she was just 55. They're incontinent. Luckily she's ambulatory. There's hearing impairment, visual impairment, a heart condition -- did I cover everything? She's never had a seizure, thank heavens. And so the hearing impairment came about over the years.

She did have -- I had her up to about a dozen words, especially the "B", the "B" sound, and she loved particular books -- Put Me In The Zoo, those books. When she would see them, she had to say the word book, otherwise I didn't buy it. And then she would carry it like a treasure to the cashier. So except that she likes to tear the pages out after awhile. But now I can't find the book now, I wish I could. I've had my sister go on the Internet and could not find it anymore. But it was part of the Dr. Seuss collection. It was not done by him, it was done by Robert Lopshire, I think.

But so Robbie did not learn by observation at that time, when she was little. You had to teach her everything. If she came to a door, she did not know how to use the door knob. Lot of things she did not know, but we taught her how to eat by herself, and I was taught by another mother, who told me how to teach her how to eat by herself. Stand behind her, and then you become one, you know, holding on to her arm or her hand, and teaching her how to scoop, that kind of thing, and how to drink. So we do learn from one another. It was not from a professional. At that time, when Robbie was little, there was no early intervention. There was no preschool, there was no school.

So Robbie didn't actually go into the school system until she was 15. Always looking for something, you know, of how to teach her, you know. Her hands were large and at that time, even when we started at the Longfellow School Project, they used to have the tiny little peg boards with the tiny little pegs, and it was too small. So one of the fathers made a -- three peg boards with dowels that they could grasp, and painted them, primary colors -- red, yellow, and blue -- the same thing with the dowels, and Robbie got one of them, his daughter had one, and then one was given to Leona Fialkowski - she had two sons who were in the program. And we left them there when we went into our own school districts. But everything had to be taught for her.

And today, she learns by observation. She's very observant, and she knows where everything is. We've been living in the same house since she was two months old, so she knows where everything is, and I wouldn't even think of changing her for when I'm no longer there; she's going to remain there, with supports.

12:48:09:01-12:49:39:23

Lisa: You were talking about the needs that Robin had, the care that you gave her, and it certainly seems clear that those needs were very intense. They were certainly ongoing, and I'm wondering how that affected your own health and well-being.

Nancy: Well of course, the stress over the years is intense, because she lost her speech. She's severely hearing impaired, she has a heart condition, she's incontinent, which is no fault of hers. We have her on a schedule, and she does try -- sometimes a little bit too late, but she does try, and she wears Depends but she can't open them up. So she goes into her room, and she has -- years ago, before Depends came out, she had underpants. She pulls out a pair of underpants, she pulls out the vinyl pants that go over them, and puts on her pajama bottoms. And so she's dressed, as far as she's concerned. So she changes into pajamas when she comes home from her program. She's very comfortable that way. Also, she doesn't mind coming out without a shirt, either, into the living room. So we always try to tell her, no, no, you have to have a shirt on. But --

12:49:39:23-12:52:21:25

Lisa: But for you, Nancy, what did that do to your own -- your own health, your own well-being?

Nancy: Well I had a history of bleeding ulcers, going back to just before I was married. At that time, they used to think it was stress that caused bleeding ulcers. They know now that it's a bacteria. So I had to adjust to that. And you learn to become your own physician. You listen to your own body, and you listen to -- everything in moderation. And of course now, the past few years, it's been going downhill. Started I think when I broke my neck, four years ago, and -- broke my neck, broke the -- fractured the cheekbone in my left cheek, had some fractures in the sinus cavities, and that was an adjustment. And then had my left knee done three years ago. Right one was done 17 years ago, and that caused a flare-up of an autoimmune neuromuscular disease, (inaudible), which in the beginning just hit my eyelids. My eyelids shut down, and so I got a diagnosis on that, and that took about two months to get them up properly, and of course I'm on medication for that. But the flare-up that happened after the deed was done caused me to -- my neck would not hold my head up, and so there were a lot of other things that were not working, and I had to have aides coming in to take care of Robbie, while I was a little -- sort of incapacitated. And I've been getting IVIG infusions. At the beginning, the first week was every day for five days. Then it was every four weeks, three days at a time. After the first year, it's now every six weeks I go three days at a time. It's intravenous immunoglobulin infusions that I get, which has saved my life. And so in fact I went through it this past Monday, Tuesday, and Wednesday, and at the same time, Robbie had to get shots in her knee. She has severe arthritis in both knees. And I coordinated that. How I did that, I don't know, for this past Wednesday.