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Graynle Edwards chapter 3


Chapter 1: Childhood and Family
Chapter 2: Dr. Edwards as a Student | Professional Aspirations
Chapter 3: Birth of Graynle, Jr. (you are here)
Chapter 4: Graynle Jr.'s Educational Experience
Chapter 5: Impact of Disability on Relationships
Chapter 6: Graynle Jr's Education and Impact of Least Restrictive Environment
Chapter 7: Joining a Community of Advocates
Chapter 8: Lack of Opportunities Post-secondary School
Chapter 9: Dr. Edwards Advocacy for Children and Adults with Disabilities
Chapter 10: Challenges for Parents Today
Chapter 11: Relationship with Graynle Jr. and Reflections on Advocacy

transcript - entire interview

Graynle Edwards Interview (Word)

transcript - current chapter

Chapter 3: Birth of Graynle, Jr.

11:24:52:25 - 11:25:50:07

Lisa: But you said life wasn't bad actually it became a little better. You became a dad while you were on active duty.

Dr. Edwards: Absolutely. Now that part I didn't like. Uh, but since I had no control because I tried. I tried to get a deferment with the congressman and uh, they wouldn't allow me to get one. So I had to sort of live with the situation that I was in. It reminds me of some of the inmates that we use to see in the prisons. Uh, they looked like they were having a good time. Well some would say well wait a minute they're stuck there so they're making the best of whatever situation they're in. Well that was us in the service. We didn't want to be there so we tried to make the best of the situation and as I said early, god bless the lawyers in our company because they kept our superiors honest at all times. (Laughs)

11:25:50:07 - 11:26:35:12

Lisa: And tell me about your son, when was he born?

Dr. Edwards: Uh, he was born two weeks before I had to leave. In other words, I was, I was called to active duty and stayed in the city for almost a month. And then, uh, around the 20th of October... 21st of October or so; it wasn't even about ten days then I had to leave, uh with the company. And that was not a good time, it really wasn't. Uh, but, it was something I had no control over. To go AWOL could have created some real problems, you know.

11:26:35:12 - 11:29:09:25

Lisa: Was it immediately evident to you that Graynle Junior had a disability?

Dr. Edwards: Yeah, I think it was. What happened was one of the nurses; I don't know whether it was her attempt to console me because, uh, my wife was not there when she said this. I don't know whether it was her attempt to console me or make me aware of things to come, but I don't remember her exact words but what she did say suggested to me that Graynle would have some problems, uh, later on in life. And, uh, I guess the first thing that came to my mind was my exposure to this cerebral palsy kids that I had worked with as a lifeguard at Temple. Uh, and uh, of course, as he, uh, became older, you could see that the classic developmental stages that you would expect a child to go through; he wasn't going through them. So it was a kind of confirmation of that that nurse had shared with me earlier. Uh, today if that same thing had happened, uh, it was a classic case of negligence in my judgment, I would have gone right to an attorney because of the, he was born with a Hylan Membrane and allowed to sit in a regular crib as opposed to being placed under in an incubator immediately and monitored on the basis of that situation. Uh, but it wasn't until he, uh, he, uh, contracted a fever and uh, we know just a little bit about biology when, uh, young tissues are exposed to high, young tissues are exposed to high temperatures, damage occurs, you see. Those electrical impulses you see that normally take place don't, and as a result the certain portion of the brain becomes damaged and, uh, I think that's what, I think that's what happened to Graynle, yeah.

11:29:09:25 - 11:31:09:28

Lisa: As you were discovering Graynle's disability, did the professionals, doctors, nurses, what have you offer you any advice or support; you or your wife?

Dr. Edwards: Well not... I don't really recall a whole lot of support other than the fact that he was, he would go to, we would take him to the Pennsylvania hospital on 8th and Spruce. And uh they would basically take him through certain, um, profunctionary testing and what have you and uh, basically come up with little or nothing about oh this is what it is, this is where he is. We'll keep monitoring; bring him back in six months, la la la la la. And I remember the last time we went, Graynle was about two and a half to three years old and he was, we were in a clinic type situation. There were a number of babies there and, uh, again it was kind of routine, uh, consultation with the physician but no specific, uh, instructions on what we should be doing. Uh, I think primarily because a lot of the the physicians at that time didn't know what to do. You see, we've come a long ways, you know, in dealing with, uh, different kinds of intellectual disabilities. We've come a long, long way and uh, I think there focus was, uh, making sure that we did all that we could that they could do to make sure that he would be healthy, you see, as opposed to neurological development. I don't recall any of that happening.

11:31:25:02 - 11:32:33:08

Lisa: Doctor Edwards, I was going to ask if Graynle Junior's disability was something you and your wife had a hard time coming to terms with.

Dr. Edwards: The, uh, I think she had a harder time than myself. Uh, primarily because, knowing the kind of neurological kinds of damage that can occur when one experiences high fever at a very young age, uh, I think I accepted it. Didn't like it, but I accepted it. Uh, I think she had a more difficult time. Uh, the, uh, because I know as Graynle was going through three and four years of age, the kind of invites that three and four year old children get, he wasn't getting. And I know that had a traumatic impact on her in retrospect, you know.

11:32:33:08 - 11:35:26:18

Lisa: Tell me a little more about you say invites; I'm assuming you mean to birthday parties and play dates, those kinds of things. Was the community accepting of your son?

Dr. Edwards: I don't think the community really interacted with my son at that age. Uh, the, his community was my sister's house, uh, and his, uh, his (inaudible) who lived in Richmond, Virginia. But his immediately community was basically his home and his sister's house; I mean my sister's house, who was extremely, extremely, loving to Graynle. Uh, but I recall one experience that, uh, my wife had with one of those parties for three or four years old. Graynle had shoes on and one lady, totally insensitive, said uh, why does he have shoes? He can't walk. That just wiped her out, you know, how do you say something like that? That's just so ignorant, uh, but anyhow I know that bothered her big time because she even told me about it, you know. The, uh, so when you talk about acceptance, uh, I think what, acceptance might be, might not be the right word. Uh, the isolation is, might be a better word. You fee a sense of being isolated, uh because you weren't getting the kind of invites. People aren't reacting to your child "oh, he's so cute de de de" You don't get any of that. In fact, I remember, my roommate, we went down to Richmond and my son was in a little carriage. And, uh, he looked at my son like my son was ET or somebody, you know, somebody from outer space, you know. I never said anything to him about that but I'll never forget that look that he gave. So that's the, as opposed to accepting, the isolation is, or rejection, was a strong emotion that I would voice. Um, yeah.

11:35:26:18 - 11:36:26:24

Lisa: Was that particularly evident in your relationships with your male friends, do you think?

Dr. Edwards: Uh, well some of my male friends, I have had some friends for many, many years. Some, uh, had no problem with Graynle. Others just moved away, you know with little or no connection. And, uh, the, what's interesting that as a personality, he's always been a fun guy, you follow me? So acceptance, that's what I said, acceptance was not the word that comes to my mind. It was more of an isolation that, uh, that uh, that I experienced.

11:36:26:24 - 11:39:48:17

Lisa: You do talk about your sister, Sonya and her close relationship...

Dr. Edwards: Oh man, she was a gem. The, uh, I think Sonya, oh one question please, was the one who allowed me to see my son not through the lens of his disabilities but through the lens of the loveable, jovial person that he was. So, uh, so we used the word acceptance. I think, as it relates to my sister, I was able to spend more time relating to my son as a normal person as opposed to disability because that's how my sister related to him. It was, it was not, uh, rare that my sister would say something to my son "If you do that again, I'm going to knock you right in your head!" (Laughs) Of course, my son would laugh, you know because he knew he wasn't going to het knocked in the head but that's the way she treated him. She treated him just like she treated her children. That was the other part of it; he grew up with her children. They, uh, Graynle's, um, relationship with people was a lot stronger in my sister's house than in my own house because kids all up and down the block knew Graynle. And he would be on the porch and they would come by, Hi Fool, Hi Fool. We learned to see that many, many times and that's because of my sister, you know. She would call kids up on the porch to be like "Listen, this is my nephew, this is little Graynle." And because of the way she treated them, they treated my son the same way. He was just one of the kids, you know, in the block. And, uh, he used to spend a lot of time at my sister's house. Especially when, uh, when I was doing my graduate studies and uh, it was not unusual for him to, for her to pick him up from his little workshop on Friday and he would stay there until Sunday afternoon. And uh, they, uh, my sister was a gem. Yeah. No question about it. Yeah.

11:39:48:17 - 11:40:23:13

Lisa: I just have to ask, because you mentioned "Foo" Who or what is "Foo"?

Dr. Edwards: That's his nickname. Little Graynle is "Foo" and my sister's children decided they were going to romanticize his name and they called him "Le Foo" (Laughs) He became "Le Foo"

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