18:33:41:10 - 18:39:07:24

Lisa: Pat, most of our conversation today is going to focus on your work with the ARC of Chester County. So I wanted to ask you how you first became involved with the ARC. Who hired you? What brought you there?

Patricia: Well I had gone back to work after 12 years of being home with my children and I went back into nursing. I went back into what was called at Chester County Hospital the maternity department, a very favorite place of mine, and working in maternity. It was a difficult role as a staff nurse but because I worked rotating shifts - I worked weekends- and I had a family at home of four children so I was working in the delivery room and we had a clinical instructor with the student nurses. Chester County Hospital at that time had a school of nursing attached to it so there were student nurses and the clinical instructor was always with the students but of course, as a staff nurse, I was also part and parcel of their experience; being with them, showing them what to do, and as a result I became friendly with the clinical instructor, the nurse, and she was the one who said to me one day as we were sitting and saying this is really tough, all these changing of shifts and now I have to go on afternoons. I'm not going to be able to see my kids' things at school, whatever, and she told me that there was an opening for a nurse at the Chester County Association for Retarded Citizens. I had never heard of that place. I didn't know what it meant but she said they were looking for a nurse. They had written for "they", you know, always the "theys". They had written for a grant and the grant said they had to have a nurse and they didn't know how to recruit a nurse or where to go, and she said she was on the lookout for somebody who might be good and she suggested that it would be a good fit. I would be a good fit for them and it would be a good fit for me. I wouldn't have to rotate shifts. It would be days only, no weekends and I said "I don't know anything about children who are retarded." I didn't have anything about... there was no course in nursing about retarded children and she said "You'll be fine. You'll be fine. You're a good nurse, you're a nice person", that kind of thing. And so I sent my resume and I was called for the interview and I met Ruth Wood and Esther Underhill and I was quite nervous because by this time I started to think wouldn't it be nice if I just worked days and I had my weekends off and I had school holidays off, and all of a sudden that was looking like a really great opportunity and I thought how am I ever going to convince them that I'm the person they need to hire because I don't know anything about mentally retarded children. But I think as we spoke that day that we just kind of... it was one of those kinds of days where you had empathy with the person that you were with. I found out that they both had children who had developmental disabilities and that they were very interested in this Tom Thumb daycare program that they were looking for the nurse to be of service in and so I went home and I said I really think I'd like to work for them, and they called and said "you got the job!". And I was very excited. I knew it was going to be very different. I went to their office. Their office was not what I was used to. The hospital is so routine and everything is set up routine because that's how you handle the stress and the pressure that comes with dealing with people who are sick or you know all of the problems that are there. You have a very set routine and this office; I mean it was the second story of an old building. I later found out it was built in 1792. It was on the historic register in West Chester and so it was like an old apartment, you know? In the bathroom was a bathtub, and in the bathtub that's where they kept their supplies; office supplies, you know, their paper. And I'm like, well this is not exactly like it is in a hospital setting but they were such nice people and everyone in the office was so nice and I thought I'm very lucky to have been hired, and to this day I would tell you I'm very lucky to have been hired.

18:39:16:12 - 18:44:52:03

Lisa: Pat, you mentioned that these two wonderful parent advocates, Ruth Wood and Esther Underhill hired you to be the school nurse for the Tom Thumb program. I'm wondering if you could tell me what the Tom Thumb program was and why was it necessary?

Patricia: Well I didn't know why there was a Tom Thumb program and I found out as I tried to find out something about the agency that hired me since I knew nothing about association for retarded citizens. What did that mean? What did they do? I found out that when parents were told to put their children away, not have them at home, it would be too difficult to raise them, it would be too hard on them, and too hard on the family and I don't remember that much was said whether it was going to be hard on the child or not but that was... those parents who really didn't want to do that, who really felt the need to raise their own children whether the child had a problem or not. I found out that they were then faced with a lot of difficulties. It was not really that easy to raise a child with a disability. So the association for retarded citizens was organized as an advocacy agency and their role was to try to find solutions to the problems that the parents were having and one of the things that they decided was that if they could have the children, of course at that time there was no right to education that was... I started in 1970 with the Association; my employment and at that time the courts were considering Right to Education but I don't think that was talked about a lot.

I was the nurse. We didn't go into policies and things like that but I found out that they didn't have, these children, were not accepted into schools. I had never really thought about that. What would it be like when my kids grew up and turned five and I was waiting for them to go to school like all mothers were and somebody said well they can't go to school and they couldn't go to school because they weren't potty trained and they couldn't go to school because their IQ wasn't high enough. I never thought about that. if you never faced it it's a totally new concept and I'm like, wow, that would be bad and so the Association for Retarded Citizens established this Tom Thumb which was a daycare program and they had a program for the children from 9 to 11:30 Monday through Friday, and these were called their center programs and they were held throughout Chester County. They had four of them when I started in 1970 and they were held in churches. Most Protestant churches have Sunday school classrooms and so there was a classroom and they used volunteers or of course some were paid but at the time that I started many of the teachers were also involved in some way or other with having a child or maybe someone in the family having a child who was disabled and or not included in the school, you know, in public school or other schools. So this was a way for the parents to have actually you know and I'm being honest here; the parents got a little bit of rest, but every day, if the child went off to school. Now they had to charge tuition, of course, and they had to provide their own transportation to get their child there but for that two and a half hours the child was in a structured activity program which benefited the child and it gave the parent a little bit of relief. And they wrote the grant because federal monies were coming available to look at programs for community programs like this that would then there would be no tuition. They would be able to have more teachers, hire more teachers but they also had to go out and recruit from a broader community not just those people who could afford to pay the tuition and that was the reason for hiring a nurse and a social worker as part of the grant requirement.

And so that was going to be my job ok? To recruit more kids and to I guess to look after the health of the kids that were already in the program but that was what the Tom Thumb program was at that time. I would say they had, in the four centers, I think we probably had maybe about 50 kids total.

18:44:53:04 - 18:45:41:16

Lisa: You said that the ARC also hired a social worker. Is there anything you can tell me about that person or that position and why it was important?

Patricia: Well it was important because they hired the most fabulous social worker that has ever been; a very wonderful lady who was a Masters prepared social worker and also as with myself had two little boys and decided to go back to work after the youngest was in kindergarten to get back into her profession and she was just a marvelous wonderful women and is still a wonderful woman today.

18:45:41:21 - 18:45:43:29

Lisa: And her name is?

Patricia: Marion Murphy.

18:45:45:20 - 18:50:08:27

Lisa: So, Pat, how did you see your role? Did you think your role working with Tom Thumb would be that as a traditional school nurse or did you think there would be more aspects of public health nursing? Did you think your role would be a little more nuance than sort of Band-Aids for bruises and things like that?

Patricia: I wish I would have had put some thought in it before I took the job. As I told you I was very selfish about that. I took the job because it was going to be perfect for me and my schedule. I never thought about what I would do in the job. I was a nurse so I thought they would have... all nurses have job descriptions when you go into the hospital. This is what you do if you're a labor room nurse or a nursery room nurse or whatever but unfortunately there was no job description for me as a nurse so I asked them what do you think I should do? And they looked at me and said, when I say they this would be Ruth and Ester, said," well you're the nurse, do what nurses do. I think that's the best thing, Pat, you better write it and tell us what you should do." So I thought I should ask somebody and I asked the teachers "Well what do you think I should do?"

I was not very popular, actually, because they couldn't figure out why they would hire a nurse when these centers; one in Coatesville, one in West Grove, one in Phoenixville, and one in West Chester, well how are you going to come and put the Band-Aid on when he hurts his finger because you could be in West Grove and I'm in Phoenixville. I think this is a silly thing to have a nurse. I had to agree - I mean I had nothing in my educational background that said this is what a school nurse does. I thought I better really do my research before a lot can find out what I should do but the other criteria that the grant told me that I had to do was I had to get out and find children who needed to come to Tom Thumb school to let the community know that we have this program because it's difficult. It's like any marketing or advertising you're going to do. You have to have some program. You have to have something that you're promoting and I wasn't quite sure what we were promoting. That was the first thing I had to find out. What were the kids doing in the Tom Thumb school and how could I go out and talk to other organizations or agencies or groups of people and tell them to come to our Tom Thumb school when I didn't know what our Tom Thumb school was going to be offering, so I really needed a little bit of time to get acquainted with what Tom Thumb was doing and what the teachers were doing and what the children were doing.

And that amazed me - that there were so many different diagnosis and conditions that the children experienced. We had children with Cerebral Palsy, with Down syndrome, with Hydrocephalus, with Spine Bifida, all kinds. And then those that didn't have any kind of label on them at all, just that they were different and so they were all, they were in the centers not grouped by diagnosis like you would in a hospital or of course you would have something but they were grouped by where they lived and so a teacher would have a child who had cerebral palsy, a child who had Down syndrome, all of them at different functioning level and needing different, perhaps different treatment, different curriculum, different support system to make their day go. The teachers were just... it was really an overwhelming thing. I didn't know if I'd ever make any sense of it and understand how we could provide a program that would be helpful for everybody.