Visionary Voices Interview with Patricia Whalen
November 6, 2013
CHAPTER ONE: BACKGROUND AND EARLY CAREER
18:20:51:05 – 18:21:06:02
Q. My name is Lisa Sonneborn. I’m interviewing Pat Whalen at the ARC of Chester County on November
6th 2013. Also present is Paul Van Haute our videographer and Pat do we have your permission to begin
our interview?
A. Yes.
Q. Thank you. I'm going to start with an easy question. What is your name?
A. My name is Patricia Whalen.
18:21:31:10 – 18:21:40:21
Q. And what is your current or former occupation?
A. Well I'm retired now, but I was a registered nurse for a number of years.
18:21:55:20 – 18:22:03:02
Q. Growing up, Pat, did you have any personal experience with disability?
A. None. None whatsoever.
18:22:04:00 – 18:22:44:03
Q. Do you remember how people with disabilities were regarded in your community growing up?
A. Well, I lived in a very small community; Drayton Plains in Michigan was a town of population 2000.
Both my parents, my grandparents lived in the same town so we knew everybody in the town and we
always knew that there were some that were a little different but that was never ever talked about or
shown. I grew up in what would be considered today a very idyllic situation.
18:24:43:13 – 18:25:11:22
Q. What kind of nursing did you do in your early career?
A. Well of course I really didn’t work too long after I finished my schooling because I got married but I
worked mostly in the newborn intensive care. Okay I worked with the little preemie babies and I loved
that and then I got married and had four children of my own to take care of.
18:25:13:18 – 18:27:33:04
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Q. Pat when you were going through your nursing training, were you taught about disability - you and
your fellow students?
A. Not much, no. It would be worked in in some of our medical/surgical nursing classes but there was
never any big talk about it. Really my only real experience with disabilities, you know as a student nurse
you had to work a lot of shifts like weekends and things like that to cover hospital needs and students
were free labor so we got a lot of that and I remember that we had a, what they called a special nursery,
and you could go … I was assigned there one day and it was staffed by a practical nurse which was a
little unusual back in the fifties, but anyway her role was to take care of newborns that had
developmental disabilities - only we didn’t call it that. We called it mentally retarded, ok? And we even
called these children mongoloids. That was the term that was used - mongoloids - and they would be
placed in this special nursery until they could be… because they were taken from their mother at birth.
And so one of the things that I did that day was to feed this baby, and since I was there for an eight hour
shift I fed the baby several times and the baby didn’t look that much different to me than any other
baby, but then I was very young. I was probably about 19 at the time so.... and I felt unhappy about the
fact and it felt strange that a mother would [not] have this baby but the nurse told me that “that’s what
we do because this baby is going to go to an institution or a home - an orphanage kind of place because
it'll never be right, and it'll be too hard for the parents to have that kind of child in the home.” And that’s
all I knew about it.
18:27:51:00 – 18:32:32:00
Q. Pat, you mentioned that there was a particular ward for infants with disabilities who were being
taken from their parents, with permission of course, and sent to institutions. I wondered if I could ask
you a little bit more about that; about what mothers were told, perhaps about having a child with a
disability and why they should be sent to foster care or institutions rather than go home with them.
A. I have to tell you that I didn’t know very much about it at that period of time, when I was a student
nurse. That was not anything that was brought out in a classroom lecture or you know in the textbook.
There’s nothing written in the textbook that says when a mother delivers a child that has a disability this
is what you say, this is how it’s handled. In nursing everything is by procedure and there was nothing
written. So that was why I was a little… I wasn’t aware to any great extent that we had this nursery. That
wasn’t part of our regular normal nursery and so, therefore, I felt that it was maybe something that was
different - not an ordinary thing. What the practical nurse told me was that it was just something that
happened when ladies gave birth because I think she realized I was fairly naïve at 19 about all of this,
and not very wise to the ways of the world. And you know as you're younger, you tend to be idealistic.
Who would ever take a baby away from a mom? Well you don’t understand this baby is never going to
be the same as other children are and it’s too hard for a mother to take care of this baby. When I really
knew about it… as I say this is kind of informal. There was nothing that said we had a nursery for special
needs children. That was never talked about and, remember, this would not be an everyday occurrence,
so it wasn’t staffed as you would staff a regular hospital ward - but this was just a place that we had. It
was a small room. It had a couple of cribs in it and a rocking chair, you know, a desk, that kind of thing.
So if there were some of the children that were born who had disabilities, this is where they were placed
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rather than in the normal nursery with the other children. Now, when I really found out about it was
when I went into the labor and delivery room; that part of my clinical experience and there that’s when I
would hear unfortunately - it doesn’t happen all the time- but occasionally there would be a child with
Down syndrome as we call it now and then it would be the doctor saying… now you’ve got to remember
we’re going back in history where there weren't ultrasounds. Where their weren't… so when a baby was
born it was, you know, a shock. You didn’t know it until the baby came out and there would be this child
who was different, and I'm speaking mostly about Down syndrome because that’s very identifiable right
at birth. It doesn’t mean that there weren't other things. Of course we had children born with spina
bifida and we had children born with hydrocephalus and other conditions like that, but there it was a
medical emergency when that child was born. I think the thing that bothered me the most is that with a
Down syndrome child, a Down syndrome child looks like any other baby except for a few anomalies. You
don’t have the medical emergency going on where you have to get the neurosurgeon in and that kind of
thing, so that was when they would say to the mother “We’re taking your baby.” And she would not of
had any proper time for that in her prenatal time, and the decision was made almost for the mother.
That had been my experience. I'm not saying its universal but if you're asking me what I saw ,that’s what
I saw, Lisa.
18:32:33:17 – 18:33:34:25
Q. Did you experience the mother’s reaction to that?
A. The mother’s reaction is always, well the ones I saw and, again, we’re not talking about a large
sample here, but the ones that I saw - mothers were usually just numb. And I'm not saying that perhaps
after the mother got back to the, after recovery and so forth that there wasn’t more time and effort put
in by the physician. I'm only telling you what I saw in the delivery room because unfortunately some of
nursing is very compartmentalized. So if you worked in the delivery room someone else or another
nurse took the baby and put it in the newborn nursery and so forth. So I didn’t have a total picture of
anything. That’s, I think, the important thing. Nursing did not, my nursing background, did not give me a
picture. Only just little pieces of what was going on with children with disabilities.
CHAPTER TWO: PAT HIRED AS SCHOOL NURSE FOR CHESTER COUNTY ARC
18:33:41:10 – 18:39:07:24
Q. 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?
A. 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
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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
Q. 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?
A. 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.
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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
Q. 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?
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A. 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
Q. And her name is?
A. Marion Murphy.
18:45:45:20 – 18:50:08:27
Q. 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?
A. 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.
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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.
CHAPTER THREE: TOMB THUMB PROGRAM, LOOKING FOR NEW WAYS TO SUPPORT CHILDREN IN THE
CLASSROOM AND AT HOME
18:50:09:15 – 18:51:20:06
Q. So Pat, tell me a little bit more about those first classrooms that you visited in your research in trying
to sort of figure out what Tom Thumb was and how you would promote it in the community. You said
classrooms had children with a variety of disabilities. What ages were they and what sort of
interventions were the teachers using to support them?
A. Well the children were mostly, certainly not younger than five, because it was at five where they were
excluded from public school and we weren't doing anything with children much younger than that
across the board. Early childhood education was certainly not even in the lexicon at that time but
anyway so the teachers were mostly just trying to do basic kindergarten type work with them. The
children were from five to 12 years of age. I think 12 was the oldest child we had and in any of the
programs.
18:52:57:27 – 18:53:55:26
So, Pat, the Tom Thumb program had received a grant that allowed you and Marion to be hired into
work in support of the children and families in the program. How else did that federal grant, those
federal monies, change the way the Tom Thumb program served children?
A. It changed the program. It didn’t really change the program. It opened up the program; a very good
program to the best that they were able to do. They were working very hard, the teachers, to give the
children some structure and some activities and to bring them along in development but what the
federal grant allowed them, the staff, to do was to reach out to a broader community; to those people
who did not have the money.
18:54:17:01 – 18:55:07:11
The federal grant allowed the program, the program staff, to reach out to the broader community so
that this program was going to be available to people who did not have the money to pay for tuition or
to provide transportation and that was extremely important. The federal grant gave transportation
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money also. I think maybe I hadn't mentioned that but I know it’s a big county. People have to go on
back country roads to get to places so it was necessary to have the federal monies for transportation as
well as the staff and that allowed the association to reach out to a broader community and have more
diversity in our population.
18:55:32:15 – 18:59:05:28
Q. So, Pat, visiting program to program, visiting the different Tom Thumb programs what did you
observe as some of the most immediate needs the children had?
A. Well, I noticed that many of them had not had any dental care and, this came about because I was
trying to put together health records for each one of the children. That was something that was not
available. There were no folders that had all this nice information. Now I was used to that, in a hospital,
if you were going to talk about John Smith you went to his chart and you looked at John Smith and you
found out all this nice information about him and they didn’t have any of those records. So I thought it
was important that we have a basic health record on each one of the children and I thought that would
be helpful to the teachers to know something about the general health of the child. And so I visited the
schools. I would…. I have to be very careful here because I was not a nurse practitioner or anything like
that. I wasn't even a bona fide school nurse. I was just ‘Pat’, you know, ‘nurse’. But I did know how to do
certain routine physical things with children and didn’t want to upset either the teacher or the child, but
I did try to have a time with the child to make a cursory physical assessment and it was during that time
that I noted that many of the children in the ages eight and nine, seven, eight, and nine had never had
any dental care. And I was really amazed because, of course ,I knew it wasn't the fact that the parents
didn’t care so I wondered would they not have… I mean some of my concerns were very obvious where
you could see that there were rotted teeth and I'm like hmm, got to do something. So as I talked to the
teachers and also some of the parents as I would meet them when they would come to pick up the
children I found out that parents had a great deal of difficulty getting a dentist to take care a child with a
disability. Sometimes it was a child behavior problem in the dentist office but most often it was just that
they were so far below in developmental milestones that the dentist didn’t know how to deal with them
so you know there’s just no room in the practice that requires that much attention is what it was. And
we were so fortunate in West Chester at that time that there was a young dentist who was just starting
his practice and he was interested in our school for some reason interested in the children and he
agreed to examine all of the children and recommend dental work as it was needed or even to do the
dental work.
18:59:37:10 – 19:00:10:13
So his only stipulation was that I would have to be his assistant because he was doing it on his day off
and you know would not be paying for his assistant to be there so, and he wasn't charging for this, and it
was a wonderful thing that he was doing and I was so grateful but we did have to have permission slips
signed so that was another thing that I had to get done.
19:00:23:00 – 19:04:26:04
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Q. So, Pat, you were talking about the need for dental care that the children had and you found a dentist
who was willing to treat the children. Did he come to the school to provide that treatment?
A. No. No, his office was in West Chester and so I had to bring the children there but he did want
permission slips signed so I decided that the best way to do that was to go to the home, meet the
parents because I was going to be transporting their child to a dentist office, and of course I always
encourage to come if they wanted to and some did. Some parents were brave enough to want to come.
Others; it wasn't that they… there were all the other family obligations and I never really thought in
looking back at that time why did I decide to go to the home? I don’t know but it was a very important
thing because when I went to the home I saw something totally different than what you would see in
the school or when the parent comes to the school. I saw the stresses in the home that having this
disabled child put upon the family. Sometimes there would be younger siblings that would be home.
Sometimes I would be making my visit at home at a time that the other kids were out of school or home
from school or maybe sick. So I saw that this wasn't easy to have… it wasn't easy on the siblings to have
a brother or sister who was disabled but mostly I saw how hard it was for the mother; the prime
caregiver and we’re talking about the seven days mostly. We were talking about moms being at home,
not in the workforce, and so this stress was on the mothers because they had to take care of a child that
was maybe five, seven years old and couldn’t feed themselves, couldn’t go to the potty. Those were
things that were extremely difficult; to fit into what we all consider normal family life. And I thought
we've got to help…
I knew it was important that the children have some kind of, we move ahead in developmental with
some of the skill levels, writing and things like that and some of the children would be able to
accomplish that but more importantly they had to know how to feed themselves, how to brush their
teeth, how to button their clothes; all those things that we did with our children when they were two
years old. It’s time to learn how to put your socks on and I just took for granted that my children would
do that and that eventually… did you really teach your child to put on their own socks or did you
children just put their socks on and when I look back at that I really don’t remember. I don’t remember
that I had to teach these things but obviously it was a combination of the child being ready and wanting
to and of course, you know, I now know that everything goes. You pull socks off before you pull your
socks on so the children learn this way; so there’s a real sequential system that goes on in this learning
of things. And these children were not going through that and that was putting a tremendous burden on
the family.
CHAPTER FOUR: ISOLATION OF FAMILIES, NEED FOR SERVICES
19:04:27:08 – 19:06:01:00
Q. Where did families go for help at that time?
A. Well, that’s what I was asking. Who would tell you what to do? When I asked the families where did
they go for help? I mean. I went to Dr. Spock, right? That was the big thing and there wasn't much in the
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way of self-help books back in the fifties and sixties when I was raising kids but we could go to Dr. Spock
and Dr. Spock could tell us when it was time to feed him solid food and when it was time to help them
put their shoes and socks on but what to expect and… but when they don’t follow Dr. Spock then what
do you do and that’s when I realized that it was… what did the family doctor do? What did the
pediatrician say about allright it’s time to put them on solid food and they're still having difficulty
swallowing formula? Well how do you get from that to the other thing? Where are the steps in
between? And I remember being very puzzled by how come we didn’t have a curriculum for this?
19:06:28:16 – 19:08:13:06
A. Where’s the procedure book for telling you how to get a child who doesn’t swallow well to move
from baby formula or baby cereal and go to the next level to pick up the cheerios and eat them, right?
And I couldn’t find that procedure in any old place and I honestly felt that’s what we needed. We
needed to know how do we get from one step to the next step to the next step with the children just to
help in activities in daily living is what this is called in nursing jargon or ADLs and of course in nursing we
were always very fond of our letters. Things were always, you know, in different things. I wanted to do
something with ADLs and so I asked the teachers what they did, how were they working on it? Was this
something they were working on in the classroom? And it was very difficult for them because of course
there was no curriculum for them either. If there was no nursing procedure manual for me there was no
teaching manual that said do this, that, or the other thing to have a child learn how to button. So they
had button boards and they had lacing boards, you know, and they would try with that but when a child
doesn’t even have good gross motor skills, fine motor skills, they don’t even have good sitting posture,
those things are much harder to accomplish.
19:08:14:05 – 19:11:02:16
Q. Pat, I wanted to ask you a little bit more about the support in the classroom and the teacher’s role in
a minute but I’m curious, still curious, about your home visits. You described a lot of your interactions as
being with mothers. It certainly was that era where mostly mothers were home with children but I’m
wondering if you had opportunities to speak to fathers as well.
A. At that time, no. Fathers were mostly out of it. In fact if there was one thing that caused great
consternation in the family it was the fact that this was a very difficult thing. Having a child that was
disabled was very hard for a father to accept and to get involved with. We have to remember that 40
years ago fathers weren't as involved in dealing with children. That’s come about since women have
entered the workforce and we have stay at home dads and all of that but in 1970 dads were off to work
and if they weren't at work or if there wasn't a dad present he really wasn't present and wasn't active in
the child’s life. Now that didn’t seem to be quite so strange to me at the time because I had a husband
who was not that involved with the children in what we’re talking about in activities of daily living, you
know, feeding the child and diapering the child and that kind of thing but the thing was different was the
fact that the feeling of failure for both parents was very present. That their child was different was a
failure, that they couldn’t get their child to sleep at night, or sit at the table or do any of the things that
would give them the sense of family life like we’re supposed to have family life. That was the thing and
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so if the mothers felt the failure the fathers did too and they mostly presented that as far as I could tell
from my limited experience in going into the homes that they stayed out of it totally and that just made
it worse for the mother as any other mother could tell you. It takes a village to raise a child so if you
don’t even have the parents involved it really is tough.
19:11:17:03 – 19:14:09:00
Q. How important do you think, based on your operations/ your home visits, how important was it to
address the impact of disability on the family as a whole?
A. It was significantly important; very important. I was amazed to find out that so many of the older, I
don’t mean the Tom Thumb children, but those who had perhaps been through Tom Thumb or maybe
never even had the Tom Thumb experience but those children who were at home with the parents and
were now young adults or even young teenagers were being treated for a mental illness, emotional
problems, depression, clinical depression, things like that and that really didn’t seem fair, did it? I mean
you know you already have an intellectual disability and now you have a mental health issue too. And
how does that happen? And that is what happens even where there was the best of support, I thought,
from my limited ability to say what is good support at that time. I was amazed to find out how many of
the children were being seen by psychiatrists for mental health issues too. So did that make a big impact
on the family? Of course it did; the whole family and you can't ever take out… we seem to always talk
around the child; the child himself or herself but you know they wanted so much to be liked and to do
things and to be able to have the same kind of life as they saw their siblings so that they did have
depression and they were upset and that was something I wasn't prepared for. I don’t know what kind
of world I thought I lived in but I wasn't prepared for looking at children who already had one kind of
disability having another. Now I can accept the fact that they might have physical disabilities and many
children who have physical disabilities; many children with Down syndrome have heart problems and
many children who have spine bifida or hydrocephalus and that kind of thing have other problems and
that’s enormous physical illnesses for the families but when you add into it that they also had mental
health problems I just thought that was … couldn’t we do something? Couldn’t we do something?
19:14:09:05 – 19:14:53:06
Q. So, Pat, you were a nurse. You had your medical knowledge. You were a young mother yourself. If
you had a child with a disability with a child at home do you think you would have known how to
provide routine care?
A. No. Not with what I knew at the time. If we’re talking about 1971/72; no, I didn’t know what to do. I
wouldn’t have known what to do. That’s what I saw when I would go into the classroom and I said what
can we do? We’ve got to be able to do something but no I didn’t have that procedure book to help me
so we have to write the procedure book is what we have to do.
19:14:53:22 – 19:16:05:26
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Q. I’ve heard in other conversations with parents that some parents were told by doctors “Just take your
child home and love them.” While I think that’s a kind sentiment I wonder was it enough? What kind of
practical…did doctors offer any practical tools?
A. No. Taking them home and love them; that’s really ridiculous. Of course you love your child and that
was the evil of taking the child away and putting it in an institution. Never did that stop the mother from
loving that child, ever, but “Take the child home and love it” didn’t help with, you know, if they didn’t
sleep at night, didn’t react in the way that they, that you would think or the way the other child had
reacted or grandma said do this and the child would be fine and the child wasn't. No “take them home
and love it” wasn't the answer. Take them home was the answer but you have to do something else. I
thought. That’s what I thought.
CHAPTER FIVE: LOOKING FOR NEW SERVICE MODELS
19:16:07:03 – 19:20:29:25
Q. So in your beginnings working with the ARC of Chester County and the Tom Thumb program you saw
lots of need. You’ve been describing that to us. What kind of models were out there for programming,
or what kind of research were you doing? What kind of tools or model programs were you able to find
that could help you and your work supporting these children?
A. Well I would like to say that it was very easy but we didn’t have Google then and that made for a very
difficult research for living in Chester County and having four kids of my own and trying to carry on a job
but so I looked around. There were people that I could speak to. We did have an intermediate unit
which did do something, but mostly for older children. It was more academic. You know trying to get
them into a more academic program. Even if that was vocational, so again there were always criteria
that had to be met in order for children to get into the intermediate unit, but there were two really nice
nurses in the intermediate unit that I had contact with to talk about what do we do but they couldn’t
help me with curriculum for feeding and buttoning blouses and things like that. So I checked around to
see what other ARC programs were doing and I saw Montgomery County had an ARC program and
Delaware County did, and their teachers were doing about the same thing our teachers were and that
was looking at stringing beads and building blocks; those things that you do with a preschool age child to
teach, you know, certain skills, fine motor and so forth but nothing was being done with activities of
daily living and I guess that was the nursing or the mom in me. I don’t know - I just really thought that
was really important that we look at those things too; that that was an important part of making that
child apart of the family. You can take the child out to a restaurant; you can go to church with the child.
Walking was a very big thing. If you had a Down syndrome child who was not walking and they're four
years old. It’s pretty heavy to carry a four year old so there were some practical things here so I decided
that maybe I ought to go back to the medical model and that was me going back to…
I went to St. Christopher’s Hospital in Philadelphia and I don’t really know why I selected that but I did
and I met with their chief of pediatrics and I told him my concerns. He was very nice. I knew he really
12
couldn’t figure out what I was talking about, though. You know, that was really not what pediatricians
talked about, feeding and, you know, getting kids to walk. That wasn't their thing so we… but he said
well you might want to meet with my nurse. And he had a nurse manager, and we spent some time
together, and she introduced me to a tool that she was using and it was called the Denver
Developmental Screening Test and I had never heard of it before and I didn’t know if it would ever be
useful but what it did do was it was devised for public health nurses to use in well baby clinics; to just
check and see where children were in the different stages of development. The development; they
broke it down into four areas and I thought that was interesting and you know, it was concrete. It wasn't
my nursing procedure manual but it was something. It was something I could look at and I could say
from this time; from one month to three months a child will follow your finger.
19:21:16:25 – 19:26:13:23
A. All human beings develop this way. We go through a certain routine, you know, from birth when
baby is born and you're told to hold this baby’s head because it’s wobbly. Well you don’t hold the baby’s
head until they were two, so when did you stop holding the baby’s head? When the baby could hold his
head up by himself? When did that occur and why did that occur? And what the Denver gave me was an
insight into the different areas of development; gross motor, fine motor. And I thought if we have a tool
that can tell us when something should occur then maybe we can devise a curriculum from that. Well I
certainly couldn’t devise that curriculum. My nursing background didn’t give me that skill level, but
there are other disciplines in the related health field that do look at these things and that would be
occupational therapy, physical therapy, speech therapy, and so I suggested quite strongly to my
supervisors that maybe we should look for specialists in that area. Those different areas to come in and
help devise a curriculum and wasn't it just one of those lucky things that I had just across my desk I had
an application for a bus driver and when I read the application this lady was an occupational therapist. I
called her and I said “I see on your application you're applying for our job as a bus driver but you're an
occupational therapist.” I said “Could you come in and talk to me?” so she came in. I said “Why would
you apply for a bus driver?” and she said “Well I have three little boys but I want to go to my high school
reunion which is back in Boulder, Colorado and I thought if I worked for you know three to four months
and made enough for the plane ticket I would go.” And I said “Well how would you like to work as an
occupational therapist? I can't pay you much more than I would the bus driver” - which is what happens
when you're with a nonprofit- but I said “I think it would just be wonderful if you could look at some of
our children and tell me whether you think some of your therapy procedures would help.” And she did.
Her name is Pat Donato and she is an excellent occupational therapist and a wonderful lady and she said
“okay.”
And so the two of us sat down and she looked at the kids and she told me what she thought needed to
be done and I wrote it down and then we decided that took care of maybe gross motor and fine motor.
We still had speech. Oh dear, what will we do about that? Well if occupational therapist could help us
maybe a speech therapist could help us. So we advertised for a speech therapist. Someone was kind
enough to answer our ad and come in and she had many concerns. She didn’t drive. How would I get to
places and so forth? Don’t worry about it, we’ll take care of it for you. Would you evaluate some of our
children and tell us what we should be doing? So with the help of an occupational therapist and a
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speech therapist we put together a little curriculum that we thought would support our goal of having
our children be more independent in ADLs. This is not to take away anything that the teachers were
doing with the, you know, some of the things that they were doing in behavior shaping and things like
that but this would be something that maybe would be more, I guess, practical is maybe the wrong term
but concrete, you know. Something that we’d really be doing and well we were… we submitted this little
idea to the team and they agreed to let us try some of these activities so we went to our four centers
that we had and evaluated the children and started some of them on some of these little exercise
programs and immediately we began to see some progress.
19:26:15:03 –19:28:44:10
Q. What kinds of progress did you see?
A. Well, head control is very important, and I didn’t know any of this. I have to tell you I learned a lot
from being with these wonderful ladies. but head control is very important. If you don’t have good head
control you don’t swallow well. If you don’t swallow well that means you're not eating, so part of the
reason our kids were not eating by themselves was they didn’t have good head control so you go back to
the basics and say let’s work on head control. And that was kind of a fun activity that we did with them
and it was things you always did with babies and that you set them down and you pull them up and first
you know their head would be wobble but then after a while they began to catch so it’s just a little
exercise program and so we would put that in a couple of times a day that the teachers would do that
and we started getting better head control which meant we got better swallowing which meant we got
better eating and less choking.
The other thing that the therapist told us about right away is well we had our centers but they were, as I
told you, the Sunday school - we were in Sunday school classrooms and the seating was whatever chairs
happened to be in there and this did not always meet with the size and the needs of our children. And if
we could get the children seated more properly with their feet on the floor and their heads… and their
back supported they also ate better. So it was a matter of just small adjustments in things made for a
much easier lunch periods. Much easier lunch periods meant for a much easier day for the teachers
because when lunch went well or you know… and then you could say well lunch went well so when we
have our break before circle time or at circle time maybe the same kind of thing. If we have the children
seating better they’ll attend to the task better and that did work. And we began to see some progress
and I thought why are we waiting until they're five or six to do this?
19:28:47:06 – 19:30:38:01
Q. I'm curious about the speech therapy.
A. Oh, the speech therapy. Well that was… the speech therapy was very important. A very interesting
lady, Mary Ann, and she went to the centers and she would evaluate where the children were, each
child was in their language development. And she would say to the teachers “Well I think what we need
to do is..” and she would give them little activities to do with the children and sometimes it seemed
simple; blow, you know like if you had a candle blow on the candle, blow on a feather. That you would
14
make, you know, sounds bu-bu-bu and well it sounded kind of silly and why are we spending all this
money, not that we spent a lot of money on any of these people - their salaries were very low - but why
are we spending any money to have anybody say blow on feather?Because that’s how language is
developed and you start with very basic sounds and I remember her saying to me well you know it’s..
I’m sure you know the mothers were probably making that bu-bu-bu because they're saying baby, baby,
baby and the first sounds that we make as humans are lip closure sounds and you go bu-bu-bu and
that’s why in every language the first sounds are bu-bu-bu and ma-ma-ma and pa-pa-pa and that’s why
we always have mama’s and papa’s in every language. So that was what -- and I said: Well isn’t that
interesting. And I thought: I was learning so much from these ladies!
19:31:45:11 – 19:34:11:08
Q. What I realized when I listened to the speech therapist tell me about this; talking about how the
mothers would be, you know, talking to the babies. I realized, of course, that really wasn't happening
because as much as the mother loves a baby you also, one of the things that we just take for granted is
that we’re getting feedback all the time from the child and that encourages us. I mean, if you would say
to someone well you're making these funny faces and doing this baby talk and everything. You know
that’s kind of silly. Why do we do it then? Because the baby smiles, and the baby gives us feedback, and
so we make these funny faces and we make these funny sounds and then the next thing we know the
baby’s making no sounds back at us. Well when you have a child that is intellectually challenged, very
often they don’t make any sounds back to you and you're… and so you just don’t have the… you just
don’t do it. You have to have the feedback or you have to be told you have to do it. You have to be, I
don’t mean told, I mean explained why it’s so important and I was like well maybe if we did that earlier
because it’s a lot easier to do baby talk to babies than it is to do baby talk to five year olds and six year
olds. Everybody feels just a little bit awkward doing that so doing it with our children in the Tom Thumb
school when they were five or six to try to encourage better, you know, our children were speaking but
maybe they did not have clear language and because we wanted to improve on that because of how we
present ourselves. The whole thing is to present ourselves as normal as possible and with the child
who’s handicapped it was always the goal to make them appear like everybody else because we still
hadn't gotten to the point where differences were accepted quite to the extent that they are now.
CHAPTER SIX: EMPOWERING FAMILIES, INFANT STIMULATION PROGRAM
19:34:11:19 – 19:36:21:10
Q. So, Pat, you're talking about the successes you were having, or the teachers were having in the
classroom implementing some of these techniques. Did you think that parents could implement some of
these same techniques at home?
A. Oh I did, yes, because parents are the first teachers. I didn’t really realize that. I never considered
myself a teacher of my child, maybe you didn’t either but you are. You know? You're always teaching
your child from the time you bring the child home. You are the first teacher. You're the one who does all
15
of those things. The one who laughs and then it’s the imitation of that that is important and we know
from studies that children that are left in orphanages and left in cribs and don’t have much social
interaction will, no matter what they're intellectual capacity was at birth, will be intellectually
challenged and emotionally challenged. A human being has to have this interaction and so that’s why
the parents are the teachers. They’re the first teachers and why don’t we get in there early and teach
right away. Why do we have to wait until they're five? Right? That seemed to me just … that doesn’t
really seem to be really hard to have thought about and I didn’t think it was anything but so then I had
to convince other people that it might be something that we should do because who’s ever going to let
educational program go in and teach babies. The doctors wouldn’t let it for one thing I mean come on.
Doctors are proprietary about their patients, you know? So would a doctor… would a doctor support
having an educational program brought into their patient? And that’s that. That was where we were
with it, and that was the dilemma.
19:36:22:19 – 19:38:20:01
Q. So tell me about the infant stimulation program and when it started.
A. Well, I figured that if we could do these things at Tom Thumb on five year olds that we should try it
sooner so we wrote up a program. Now this was, you know, the speech therapist and the occupational
therapist and myself, we met, you know, a couple afternoons each week and we’d think well what do
we do? What should we do first and what would we do this? So we had a little plan, not anything too
great but we had a little plan and I suggested to Ruth Wood that we submit this to the board and see if
they would approve it. And, well, I guess I did a convincing job. I hope I'm doing as well here as I did then
40 years ago when I went before them and said “Look I think this is what we should do” and I really had
the backing of Ruth Wood and Esther Underhill and I think the teachers were not displeased with what
we had come up with. So the board agreed to let me try this program out with babies, with children
under the age of two. Now all we needed was a child and a mother who would say okay but…
19:38:21:10 – 19:42:56:25
Q. How did you find that mother would say okay? How did you recruit children for this new program?
A. They found me. They found me, you know. We had a wonderful support staff at the ARC office and
they worked very hard to, you know, help us do all the things that a support staff does and one of the
big things that the agency did was to have fundraisers and one of the mothers, one of the ladies who
was a volunteer with the agency had a baby who was born Down syndrome diagnosis and her name is
Betty Messina and Betty had… and Betty was 40 years old when she had David. She had a five year old
daughter Karen and she had David and she was really, she was, I would say she was devastated but she
was also a fighter, you know? She wasn't going to give up and of course, with her knowledge with having
been a volunteer for the agency, she knew that this was going to be hard with David. She had seen other
children and other parents with children with Down syndrome but she was also friends with one of the
support staff in the office. Ruth Collins was her name and Ruth Collins came to me one day and said
“Pat, this infant program I hear you talk about and I helped type up some of the papers and everything.”
She said, “My friend Betty has a Down syndrome baby and she’d like to have that program. Would you
16
do that program?” And I said “Yes!” Well how can you be… you have to be…, I don’t know. I just took a
leap of faith and Betty took a leap of faith with me so on April 13th 1973 I went to her house and we had
our little program all typed up, you know. This is what we’re going to do and Betty just was such a
marvelous, marvelous first person. How could this infant program, how could all of this had happened if
we hadn't had somebody who was enthusiastic, willing to work not only with David but to promote the
program, to promote it in the community. She was active and lived in West Chester and you know and
her family was active. They had a business in West Chester and she just went all out for it. She did
everything. If the daily local news wanted to come to talk to her they could come to her house and she’d
talk to him. And remember we’ve already talked about the fact that maybe having a child who’s
different, you don’t broadcast that around so for Betty to say to the daily local news “Come into my
house. Let me show you what I'm doing with David. Let me show you how I put him over the ball. Look
at what he's doing. Look at his head control.” And she just went on and on with what he could do.
Well the next thing I know the Philadelphia television stations were calling and saying “I hear you got a
program out there.” Betty was “Come on! Come on out and see us!” and so Edie Huggins came out and
interviewed Betty and saw David over the ball and all of that and that went on the six o'clock news. That
was the important thing. Betty was the key, important person. The fact that she cared enough to step
ahead maybe and say well maybe we always kept people who had, if you had a baby with Down
syndrome you didn’t talk about it to anybody. I'm going to talk about it and I'm going to talk about this
program and she did. And the next thing I know I have five babies in the program and we went on and
after the first year we had 20 babies and that was the beginning of the infant program.
19:43:08:19 – 19:43:20:24
Q. The infant program, which grew so quickly in the first year, did that help to alleviate any of the
pressure or isolation mothers had been feeling at home?
19:45:31:15 – 19:47:30:03
A. Yes, well we developed or started a parents group. The social worker Marion was very instrumental in
establishing that and getting people, getting the parents to come so we would have a little agenda. I
remember one agenda was we were going to talk about feeding and its surprising; parents are always
the first to put themselves down that they're not doing enough and I realized that a lot of the problem
was the fact that they weren't being realistic about how much food should a child at the age of one or
two be eating. So we added in the problem that we had with the children with swallowing and things
like that and you know fat and muscle tone that we were trying to overcome with our exercise program.
The fact that they were trying to stuff too much food down wasn't good. Those were the kind of
directed program we had but then we had refreshments and the coffee and the social time to talk and it
was really wonderful to see the parents bond with each other and kind of get together and again, I want
to emphasis we were doing this over all of Chester County and bringing in any child that needed the
program, and so that was also very interesting. We’re talking about 1973 and four and five - to see how
naturally that developed; that the bonding over having a common concern and working through that
common concern of a disabled child was very helpful.
17
19:47:32:25 – 19:48:29:05
Q. We’ve talked a lot about the moms as being the providers of much of this primary care but did this
program give fathers the opportunity to become involved?
A. Yes, yes. I really wanted that. I really wanted to promote that because I think as difficult as it is for a
mom to have a child who’s disabled it’s a little different culturally for the father and especially in the
seventies but nevertheless fathers love their children too very much but I think that while there was
always a kind of natural reticence about the babies and that’s for moms and I don’t want to do anything
wrong; it was even more important to make sure the fathers were involved with the children who had a
developmental problem and so as much as possible we always got the father involved in the program.
19:48:29:24 – 19:49:53:10
Q. Did you see that involvement change the relationships perhaps that dads have been having with their
children with disabilities?
A. Oh yes, oh yes. I definitely saw that. It was interesting, you know, we did have quite a large, we still
do in Chester County, Hispanic population and there culturally it’s different because a father, the male,
has perhaps a little different role than what suburban Chester County might have thought the role was
so we had to work though that and we were very fortunate, again, to found a teacher for our program,
Aggie, who was raised in Texas and was fluent in Spanish and could work with our Hispanic population
and that was important because then we could present our program in their language and Aggie was
able to work then to get the fathers involved but culturally we never quite succeeded the same way with
our Hispanic population as far as the fathers were concerned but we did make some movement out of
that and I think just the fact that we had a teacher who could speak the language was important.
CHAPTER SEVEN: BUY-IN FROM THE MEDICAL COMMUNITY, FIRST STEP PROGRAM
19:49:53:27 – 19:51:39:04
Q. Earlier you said that pediatricians could be a little territorial about some of their young patients.
A. Right.
Q. And I wondered if the pediatricians were noticing a change in the children your program was serving?
A. Well as a nurse I felt, of course, that reports; that’s what you have to do; going back to my charts.
Well of course the doctor would have a chart on each one of his patients so I would make the teachers I suggested- that we always have a current report so that when there were always scheduled
pediatrician visits for the baby that when the mom went in that she would have a report, you know, one
of our reports and that’s where we thought the child was and what the child was doing. I thought that
was going to be a really bonus thing and I found out afterwards that, you know, somebody in the office
clipped it in the chart or threw it away; whatever they did with it. What really sold the doctors on it was
18
the parents. The parents would say “He’s doing so much better. I’m able to… he’s sleeping better.” And
just so… yes, the doctors began to respect the program because the parents were enthusiastic about it
and then we began to get referrals and that is, you know, that’s the hardest thing to get the referrals
you want and we began to get referrals from doctors. I still think that the reports were a good idea but I
don’t know that they really made a difference.
19:51:39:28 – 19:53:41:29
Q. So your program, you said, started in 1973. At that point the right to education had passed in 1972
and children who were starting to make their ways into public schools from their communities. What
effect did that have on either the Tom Thumb program or your infant stimulation program? Did anything
change because of that?
A. Oh, absolutely. It was a grim time because we were very happy. The Association had fought for this
{Right to Education] so it was not that the Association was disturbed that the Right to Education had
been established, but it did take our Tom Thumb program - all those children who were five, six, seven,
eight, nine, ten, eleven, twelve all disappeared, and we weren't getting any new ones in so…
The good thing was that the infant program, which was taking children from birth to two, had a way of
growing. Suddenly, we had three and four year olds so at that time we sat down and said hmm, we can
keep the centers open if the centers take the children from three to five or two to five, whatever, in that
range and we still keep the home program for the babies, you know, the birth to two and that’s what we
did. The board looked at it. The board approved that, but no longer could we be the infant program and
the Tom Thumb program so we became the First Step program. And that was a very big, very big change
but a very wonderful change because I think we were probably in the forefront of having a
comprehensive program from birth to five here in Chester County.
19:53:42:06 – 19:55:19:29
Q. Sounds like early intervention way before…
A. Yes, yes and it was. It was a wonderful, it was a wonderful program to be involved with and a
wonderful staff, and it meant that we were able to save the teachers jobs and, remember, these were
the ladies who had been, for the most part we had ladies, in fact I don’t remember that we had a male
teacher, that had struggled all those years because Tom Thumb was in existence before I came on board
in 1970. I think it had started back in, I think it was already nine years old; nine years a program by the
time I started. So you can imagine the time and energy that people had invested in learning and working
with and learning about and working with children who had disabilities, and to have lost that because
we lost our population wouldn’t have been a good thing. So First Step saved a lot, and also we were able
to then get funding that meant that, more secure funding. Funding for non-profit agencies and programs
sponsored by non-profits is always a dicey thing.
First Step was able to do that; get funding because I think it was the fact that it was a comprehensive
program birth to five with both components; the home program and the center program.
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19:58:45:08 – 20:01:13:14
Q. So Pat I’m wondering how the first step program continued to grow once it was officially launched as
its own program.
A. We did outreach to different health organizations like the visiting nurses and the Chester County
Health Department. We went to well-baby clinics. We were able to evaluate babies there or to give inservice to the nurses so that they could do their own evaluations and then we would get referrals. We
also heard from other social agencies who might have had a concern about a family or something like
that that some issue in the family that might, they might be concerned about a baby. We also received
requests from the Chester County Hospital, from the maternity department, to evaluate premature
babies once they were discharged from the hospitals if the parents wanted to just evaluate and see how
this child was developing in those areas that Denver talked about; the gross motor, that kind of thing so
that parents were reassured that if their child was born prematurely they're still going to be okay and
that was a great concern and then, of course, there were just people who heard about our program and
would call and say, “you know my neighbors got a child could you come out and look at it?” I don’t know
how many babies I went out and looked at because somebody was just concerned about them and it
was always so wonderful if you could say, look, here is a standardized test and here’s how all kids
progress and you're maybe just worried a little unnecessarily and your baby is going to be fine. Those
were always the best visits perhaps but… and the other thing that we were able to do is to move totally
into all areas of the community so that, particularly in the southern part of Chester County. We had
some pockets of poverty that maybe no one knew about it and we were able to, with the help of the
Chester County Health Department and their nurses and their outreach and going out with them, were
able to provide programs to the parents there and those homes too.
20:01:14:26 – 20:02:25:01
Q. This was pretty radical stuff for the early seventies and a far cry from school nursing. Did you love the
work?
A. Oh I did. I did. I loved it so much that when we started the infant program in ‘73 and one of the first
babies that we had, not David, but another baby and he was a little older than David. David was six
months when I saw him the first time, but this little boy was like 13 months or something. When he took
his first step I raced home and called my mother who was long distance in Michigan and at that time
that was an expense to tell her that “Jay took his first step!” My mother said “Jay? Who is Jay?” Yes, I
love the program. I love the program. I love the people in the program and I love the babies, the
parents. Yes. So I was very sad when I had to leave because that’s the next thing.
CHAPTER EIGHT: PAT MOVES TO VIRGINIA, LEAVES ARC OF CHESTER COUNTY
20:02:34:19 – 20:06:05:14
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Q. Pat, when and why did you leave the ARC of Chester County and your work with the First Step
program?
A. Well I left in September of 1977 because my husband was transferred. He received a promotion and
he was transferred to Virginia and it was the accepted thing to move with him. I thought, briefly, about
well maybe I could do something part-time. We talked about it at the office. Maybe if you, could you
move to Maryland and maybe could split and you could drive up here and the answer was “no” so we
moved to Virginia and had a very sad leave-taking here. I was very bereft without my program down
there. For about two years I kind of sulked. I am so pleased that I had the opportunity to work for the
Association. I worked for wonderful people who gave me wonderful freedom of opportunity to do this. I
mean when you really think about it and you think about when I did it that they were, that the agency
was so supportive of these little theories of mine that we could work with babies and this would be a
good thing and not a bad thing and that we could do head control activities with newborns. That was
really wonderful, and it wasn't only with the infant program. I do have to say that the Association also
gave me plenty of opportunity to look at all areas of services that were being provided for the mentally
retarded. I was able to go to Embreeville and Pennhurst to see the programs there; to take good from
what was good and to be very glad that we were looking towards normalization and closing those
institutions down because in my own personal opinion they needed to be closed down. It’s not that
everybody was unfeeling and uncaring but the end result was; it was warehousing and that isn’t good
and now we have group homes. I was able to be in on the beginnings of the group homes as it was
taking place here in Chester County and pleased to see how that was going. The ARC continued to move
into other areas; recreation for the older retarded child young adult and those were all things that I had
had no experience with and so giving me an opportunity to see all of these things was marvelous. I
certainly learned a lot about public health nursing from my outreach.
20:06:12:07 – 20:06:29:17
A. So I will always be very grateful that my little resume came into the office there at 20 North High
Street and somebody picked up the phone and called me and hired me.
20:06:29:25 – 20:07:44:25
Q. You said you were sad to leave and sulked around Virginia for a couple of years after leaving. Did your
family understand the depths of your feeling and connection to the program?
A. No, no they couldn’t have because you know mom was mom and you know life goes on with the kid
even if you have a job, you know? There was still the soccer game to get to and the drum lesson and all
of that so they were pretty much taken up with was I available to drive them places. I don’t mean to say
they were callous. They knew. My daughter, I think, responded more. She was younger and she seemed
to know a little bit more about mom is going off to do this and she would hear the different names and
so forth so I think she maybe understood a little but more and of course she was there those first two
years that I sulked in Virginia too so she understood that mom wasn't very happy but for my sons; they
were busy. They were young teenage boys so they don’t really care as long as the food is on the table.
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20:07:46:16 – 20:08:48:01
Q. Did you continue to work with children with disabilities when you were in Virginia?
A. No. I did work with HeadStart and in its own way HeadStart has children with disabilities because
economic disabilities are very real. Poverty in Virginia, poverty for children, is devastating, okay, and it
always will be. And if there’s one thing that I would wish is that we could finally get a program that
would solve some of this poverty with children because it’s so devastating - Philadelphia Public Schools
is just one example- but I never went back to work with children who were disabled. I went on into
community health nursing and did a lot of hospice nursing and finished my career in hospice nursing.
20:08:48:15 – 20:09:19:25
Q. Why did you never go back to working with children with disabilities do you think?
A. Because I left my heart in Chester County. Would that be the reason? I don’t know. Because I think
the opportunity that was given to me by the Association for Retarded Citizens in Chester County was so
and I have to use the word ‘unique’, could never have been done again. I never could have found that
again.
CHAPTER NINE: REFLECTIONS ON WORK WITH CHESTER COUNTYR ARC
20:09:22:10 – 20:09:28:09
Q. So First Step still exists.
A. Yes.
Q. Some 40 years later.
A. Yes.
20:09:28:20 – 20:10:14:15
Q. What's the program like today?
A. Well as far as I know I hear wonderful things about it. I know that they're still seeing children. They're
still seeing children in the home, so I think that piece of that which was dear to my heart, that we start
early, is still there. They have a wonderful new building that has; they don’t have to worry about the
borrowed chairs and tables and things in other people’s facilities. They have their own and I think that’s
wonderful and they're providing wonderful service and I think that’s absolutely the best thing that could
have ever happened.
20:10:15:15 – 20:10:28:28
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Q. Would it be safe to say that the career that you had at the ARC of Chester County wasn't the career
you had envisioned for yourself?
A. No I never would have, never would have expected that.
20:10:30:17 – 20:12:02:19
Q. So what did the program mean to you? How did it change you? Or did it change you?
A. Oh absolutely. It changed me because I was… I had never seen these kinds of problems. When you're
in the hospital you're protected to a very great extent. I know that might sound strange because nurses
see all kinds of things in hospitals and that’s true but you see them in a different way. You see them in
your environment; the environment that you're controlling and having gone into this program and
reached out to the community and seen people in their homes and seen the effects of this which comes,
no matter what social status, there’s no protection against having a child born with a problem. It can
happen to anybody and does. And so that certainly opened me up to knowing that there’s always going
to be more needs out there that needs that must be met and so I've always wanted to … I've had a
better appreciation of a world that’s not as narrow as mine had been before.
20:12:04:05 – 20:12:27:26
Q. So of all of the things that you accomplished, the many things you accomplished, through the First
Step Program to the infant stimulation program through Tom Thumb; is there any one thing that gives
you the most satisfaction?
A. Yes, one thing; that 40 years later it’s still here.
20:12:29:05 – 20:12:52:13
Q. Is there anything you wished you could have accomplished in your time with the ARC of Chester
County that maybe you just weren't able to?
A. Well I would have liked to develop the preemie program a little bit more and I would have liked to
take this program nationally. You know, like HeadStart is; I think there should be a First Step program all
over this country.
20:12:57:18 – 20:14:51:10
Q. When you started your work with the ARC of Chester County, you didn’t have any real experience
with disability; you talked about that. You had your nursing training and it would have been probably
easy for you to stick to your basic job description and leave innovation to other folks. Why did you act?
A. Well, because I’m a mother. I think that was the most important thing. It’s hard to be a mother. Does
anybody really realize how hard it is to be a mother until you get to be one? And when I saw the
mothers and I saw the need I, you know, it just seems like you have to try. You know there was one
thing that was very important that I have not said here, that I never went into the infant program with
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any parent with the idea that we were curing your child, okay. That was not the purpose, the intent. It
was not even on the radar screen. The idea was to help with a problem. If we could take that problem
and break it down into small parts and make it work better but the infant program was never put out to
be a cure for developmental disabilities. However it does mean early intervention, does mean there is
more hope that the outcome is going to be better and that’s what we were striving for. That’s the one
thing.
20:14:53:11 – 20:15:55:16
Q. Pat, do you think it’s important that people who are outside of the disability community or would
consider themselves as not affected by disability to take a more active role in supporting their friends,
neighbors, family members who have children with disabilities?
A. Yes, and that is certainly apparent today. I mean how many of our children go to school with children
who have disabilities now? That did not happen 40 years ago and that’s important because you begin to
have a community that accepts those that are different rather than trying to change those that are
different to be more like the normal so we’re a more diverse society now than we were and that’s good
and that’s the way it should be.
20:15:57:23 – 20:18:05:29
Q. Though today even though we are more diverse, hopefully more inclusive, there are still children and
families that fall through the cracks either because of disability or poverty or for any number of reasons.
Where today do you see the most need for innovation?
A. Well I see absolutely a need in our Department of Public Welfare or whatever it’s called now; that
they're must be a program like First Step that will go into, let’s say just even the home part of it, that will
go into the home where there are children that are in crisis and work. To let children die, starve to
death, be locked in closets; and those are things that are in today’s paper. Also that’s not something that
happened 50 years ago and it’s still going on today. So the need for programs out there and that’s where
we need to be. We need to… you can't have a social worker have a caseload of 250 or 500 cases and pick
up all of these problems. We’ve got to get in more specifically. That’s what we did with the infant
program. We came in on a specific area. We said there’s a need here to get something done when
children are younger. Even if it’s only in having better head control and that’s what we have to do where
we have all this poverty and we have identified, it’s not even that we have to identify those children,
they’ve all been identified and somebody has a file folder on them some place which shows a file folder
doesn’t do it. You have to have the people and you have to have the caring and that’s where we have to
be and I would like to start a program but they won't let me.
20:18:06:13 – 20:18:39:21
Q. Is it still possible for one person to make a difference the way you did 40 years ago?
A. Absolutely. So I want whatever student is listening to me right now to understand that there are so
many needs out there, and I don’t know that what I've done is so important but it was a start, you
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know? And that’s what you have to think about. You have to think about starting it, but start it well so it
stays.
END
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