Chapter 2: John's Birth, Reaction of Family and Friends

06:30:16:00 - 06:30:41:00

Lisa: So today Joe, much of our conversation is going to focus on John; your youngest son who also has a disability and I'm wondering, firstly, if you can tell me when John was born.

Joe: John was born on June the 4th, 1972; same year as the PARC Consent Agreement [Right to Education]. Same year as the first days of education for children with intellectual disabilities.

06:30:42:00 - 06:32:31:00

Lisa: When John was born, was it immediately apparent to you and Shirley or even to his physician that he has a disability?

Joe: I think it was apparent to the physicians but we realized that all of our other six children were different from each and every one of the others in several different ways and so though John was a bit different, a little kind of lethargic and kind of like soft, maybe, to hold. Shirley did express some concern about it because he um he wasn't breastfeeding very well as well as the other children. So she had a concern about that but the doctors hadn't said anything to us at all. But after we spoke about that, the very next day, the doctor did tell her at 5:30 in the morning and what he did is he said, "Your child is a mongoloid". Period. That's all he told her. Maybe he didn't know anything else about it because there wasn't much in their education about. Still, I think maybe he could have had an encouraging word or two. So she called me and told me, and we had a friend who had a child with um Down syndrome so we knew a little bit about what we were getting into but we had no idea of the severity of John's condition or how he would be or as good as or not as good as the young lady that we knew. I was scared. I was depressed. I'm glad I hadn't been ... I was not asked uh to make some important decisions about John in those early weeks because I would not have been able to make a good decision.

06:32:31:20 - 06:34:08:00

Lisa: Joe I wanted to ask, I wanted to go back to something you said. You said that the doctor told Shirley um told her in the early hours of the morning, and on her own.

Joe: Yes.

Lisa: And so um I'm wondering what that experience was for her and was there anyone to support her in that moment when she was given this...

Joe: Yes. Well not right at that moment, no. At that moment, right after that even the nurses that were caring for her almost quit talking with her. They didn't know what to say and so they probably felt it was better to be silent. Except for a nurse's aide whose name was Amelia, and she was not a professional nurse. She just bathed babies and changed their diapers and held them up for folks to see but Amelia did get to see her and she told her "Honey" she said, "I've seen a lot of babies like yours and most of them do really well." So that was after, but when she, after she called me and told me the news, I mean, I went into an immediate tailspin. Right then I was useless, but I knew I wanted to be with her so I got a neighbor to come over and watch the children and I raced to the hospital to be with her, and she had a smile when I got there - a smile from ear to ear and tears streaming down her face and she said to me "Joe, we have a job to do." So she got it right away. It just took me a little longer, uh a good bit longer as a matter of fact.

06:34:08:10 - 06:36:30:00

Lisa: So I wonder if you can tell me a little bit about that. Was it was you knew perhaps about John's disability or similar disabilities from your experience with your friend or maybe what you didn't know about the disability that felt particularly overwhelming to you.

Joe: I think it was more about what I didn't know about it. By that time I had been a scholar for many, many years. Uh got my PHD in 1970; John was born in '72 so I spent a lot of time in education. So whenever I got that news, in spite of the fact that I was in a bit of a tailspin from getting the news, I went to the library to find out more about it. What I read was children with Down Syndrome - only they said "mongoloid" in the studies but if you don't mind I'm not going to use that word. Those children with Down syndrome don't learn to walk until they're four years old or more. Most do not learn to clothe or feed themselves. Most of them will need perpetual care for their whole lives 24/7 and many, if not most of them, are mute. And you know, I'm sure from your experience that none of that is true, but that's what I read; scientific studies based on collected data. So that put me into my tailspin, but later on I realized where they were getting their data. They were getting their data from what they call state schools and hospitals which were neither state schools nor hospitals. They were just warehouses where they put children whose families were advised to place them because of their disabilities and that I found out later, because I actually visited those places on unannounced monitoring calls - they were not receiving any stimulation at all just because they were undermanned. One person might have eight or ten children to take care of. How can you be a parent to one of those eight or ten children; teach them what they need to know to get along with that kind of work condition uh space; that kind of work conditions.

06:36:32:25 - 06:38:28:15

Lisa: As a researcher were you able to find any kind of alternative information; information that didn't come from institutions. Anything that gave you hope for what John's future might hold?

Joe: Not much, not much, because see, in those days, most families, many families, had children with disabilities either placed in an institution or kept them entirely at home. I mean. I delivered papers and I found children like that in the backyard; some of them very capable but they were penned in and they couldn't get out or they were kept indoors so there were not many people with intellectual disabilities in public. Thank goodness we had that friend who brought her daughter to my house. My kids loved her by the way. They played with her and they all had a good time but um there just wasn't that much around. And remember, John...the kids didn't go to school. They just didn't go to school and, plus, their parents enrolled them in a public school where they got no support and sometimes they were mistreated by the teachers and the students. So no there wasn't anything until a few years later there began to be some books written about Down Syndrome in particular. John was about two when we read the first really encouraging book and I don't remember the name of it and I no longer have it because I was in the habit of lending anything good like that to people who needed it and, they didn't always get returned, but it was a very encouraging book. It described what the condition was, even technically, medically what it is and it helped us a lot to understand how John became that way um and it gave us hope for the future because it did put it out that they are capable of learning most things.

06:38:29:15 - 06:40:55:00

Lisa: What did you and Shirley tell your other children about John, if anything?

Joe: Well, they weren't home when I got the news broken to me. Well they weren't all at home. The older ones were in Pittsburgh with my mother and I had the younger ones with me. I was on summer vacation at the time. So I wanted to wait until they were all together so in a couple of weeks they all, we were all together and I broke the news to them in the living room. But by then even, though I was in severe depression, I knew that it couldn't be that way in front of them so I began to think about how to tell them about this without having them go into some kind of a funk, so I still remember my words. I remember saying that we have a child like Gina. Gina was the girl that they knew. But we don't know how serious he is, how seriously he is affected by whatever Gina has, and we should think of him as a plus - the mathematician in me - as a plus instead of a minus. That we have each other. We have everything that we had before, but now we have something else. We have John and he is going to be a positive thing in our lives. I remember telling the kids that he would help them to determine who their best friends were because they would have to accept him as being part of you. And for many years I never even thought of asking them what was going through their mind whenever I did that until not very long ago, maybe five or six years ago, I asked them. It was amazing to me. It really didn't surprise me, but it just made me feel really good. The oldest boy said, "Well, Dad I'm going to teach him, I was thinking of how I was going to teach him how to hit a baseball, hit a whiffle ball, how to swing a golf club, and how to shoot baskets". The next oldest boy, "Oh I was going to teach him how to play a guitar and sing and do some music". Every kid was talking about what they were going to do to help him and, as a result of John's entry into the family, all of the children went into professions that involve working with other people; three teachers, two physical therapists, and a nurse. So I really think that influenced John. John's influence on them helped them choose their professions.

06:41:04:10 - 06:44:28:10

Lisa: Joe, we were just talking about your children's reaction to the news that your youngest, John, had Down syndrome. I'm wondering about the reaction of your extended family or even neighbors, folks in your community.

Joe: Well I'll tell you the good, the bad, and the horrible. My mother and father I don't think accepted it at all. But John eventually... within two years my mother was convinced that John was going to be just fine. I don't think my dad was, but my dad um was ill himself. He had a massive stroke shortly after John was born, and... but my dad was also the kind of person who knew he just had a positive outlook in life so he knew that we were going to be okay. But there were some members of Shirley's side of the family, probably some of my family members too, who were actually wondering why God had punished Joe and Shirley by giving them a child with a disability. And I know there were some people that really thought something was wrong with our family, with what we were doing. So I just developed a pretty thick skin about that and decided that we would just try to educate them as John grew up, you know, to see that John was a blessing, but that wasn't at the beginning. After a few years, I came to the conclusion, though, in mulling that over, that belief of some of our relatives, that God had nothing to do with that. Good and bad things happen on this earth because of probability. When the egg gets fertilized there's a three in a thousand chance that it's going to be fertilized in such a way that there is going to be an extra chromosome, and that child is Down syndrome. Came to the conclusion that we had John as a stroke of good luck. People might view that as a stroke of bad luck, and maybe in the beginning I would have. I did, I probably did see it as a stroke of bad luck, but where the faith comes in is whenever you are confronted with a situation what you do about it, that has to do with the way you really feel in your heart. That changes and that grows and that becomes a very good thing eventually if you let it and that's not chance. That's you and the Lord working together, I believe. So yeah, we had John as a stroke of luck and look how, look what we did with it, you know? How we ran with it. I think even at the end some of those relatives were wondering about it, and John and Shirley's values changed their minds; decided that we were okay.

06:44:31:05 - 06:45:57:15

Lisa: Was there any suggestion again whether it was family or professionals, someone in the community, that John should have been placed in an institution or some kind of residential program?

Joe: Not by the medical profession. John's pediatrician, Doctor Mitchell, when we took him home from the hospital had some advice for me because I ran up to him and said, "Now what do we do?" He says, "Well you've been a father to six other children. He said take him home and treat him like a baby because that's what he is." You know later on those words just were so beautiful for me to remember, "he's just a baby" and the doctor that gave us the news was not our doctor much longer after that. We decided we needed to change doctors. I really, it wasn't from the medical profession but there were people, some of whom had children of their own with disabilities, who suggested that since we didn't know the severity of it yet when John was just a little infant that we go ahead and put him on a waiting list for an institution. Shirley and I gave that about two minutes flat and both said "no way". This is part of us. We're not parting with him. So yes, we were advised to put him in the institution but it was just a non-issue almost well from the very beginning.

06:46:00:00 - 06:49:15:00

Lisa: You were talking, Joe, I think very candidly about your struggles when John was first born to accept his disability. Was there a particular moment or something that caused you to move past those feelings and connect with your son?

Joe: Yeah, at last. That funk that I was in lasted for about six or seven weeks. I'm sure that, had I been diagnosed, I would have been clinically depressed and given some medication, but I chose not to go that route. I chose to try to do it myself and then, if I couldn't, I would do what I had to do. I tried to do it just by prayer and trying to jack myself up. I wasn't getting anywhere with it. About five weeks I was beginning to get a little worried because I had to teach the second summer session and I need to make bucks for my family and I was praying one night and I said "Lord you've got to do something. You've really got to do something. I need a message, I need some direction and I'm not getting it and I've been praying for it for five weeks and I'm really getting upset with you, so how about it?" Well after saying that prayer for about a week I remember one night putting my head back in the pillow and practicing a form a prayer that we often don't think of trying and it's just to try to make your mind blank and be open to whatever can fill it. And, by golly, I don't know if it was God speaking to me, but it came to me what my problem was, just like that. I knew why I was in such a funk, and it was because I was thinking about how having a child like John born into my family was going to affect my life. You know, not going to walk until he's four, going to need constant care all of his life, might even be mute. I was pretty sure that was a possibility and I just didn't know how I was going to deal with that and I was frightened, and so that particular night I said "Okay, God. I opened my mind." The message I got, as I said was, "Think not about yourself. Think about the gift you've been given and what you can do to help this gift, this child, to be the best that he can be." And I swear, I put my head back, closed my eyes, and I slept like a baby that night. I woke up the next morning totally changed, just like that.