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Patricia Whalen chapter 6




chapters

Chapter 1: Background and Early Career
Chapter 2: Pat Hired as School Nurse for Chester County ARC
Chapter 3: Tom Thumb Program, Looking for New Ways to Support Children in the Classroom and at Home
Chapter 4: Isolation of Families, Need for Services
Chapter 5: Looking for New Service Models
Chapter 6: Empowering Families, Infant Stimulation Program (you are here)
Chapter 7: Buy-In from the Medical Community, First Step Program
Chapter 8: Pat Moves to Virginia, Leaves ARC of Chester County
Chapter 9: Reflections on Work with Chester County ARC

transcript - entire interview

Patricia Whalen Interview (Word)


transcript - current chapter

19:34:11:19 - 19:36:21:10

Lisa: 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?

Patricia: 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 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

Lisa: So tell me about the infant stimulation program and when it started.

Patricia: 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

Lisa: How did you find that mother would say okay? How did you recruit children for this new program?

Patricia: 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 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

Lisa: 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

Patricia: 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.

19:47:32:25 - 19:48:29:05

Lisa: 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?

Patricia: 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

Lisa: Did you see that involvement change the relationships perhaps that dads have been having with their children with disabilities?

Patricia: 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.


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