19:16:07:03 - 19:20:29:25

Lisa: 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?

Patricia: 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 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

Patricia: 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 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

Lisa: What kinds of progress did you see?

Patricia: 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

Lisa: I'm curious about the speech therapy.

Patricia: 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 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

Patricia: 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.