Chapter 3: Education for John

06:49:19:25 - 06:55:43:00

Lisa: I'm wondering if in the absence of direction from the medical profession where you began to look for resources for John?

Joe: There were some - there was something that happened about a year after John was born, a little less than a year. A group of twenty-five parents got together and decided to try to form a chapter of the Arc. Now I didn't even know what the Arc was, but there was this ad in the paper, and I told you what a wonderful [wife] Shirley was. Well, she scoured the newspaper every day that could help us or help John and one day she said "Joe, look at this!" And showed me this ad that said there was a call for a meeting at the sheltered workshop of any parent of a child who would be interested in forming an organization, an agency, to help each other and to help the children. So we went to that meeting and twenty-five of us were there, and we decided we wanted to be an Arc chapter. We only needed ten and we had twenty-five. So that's how it started and then, being on their mailing list, the Arc of PA's mailing list, and beginning to get some up to date stuff that was going on. Education was brand new. I went to my first Arc PA convention in 1973. About a year after John was born, I began to get some really good stuff. That's probably how I found out about that book I was telling you about earlier, you know, that described Down syndrome in a much more positive way, and when I went to that convention it was just not even a year after the Consent Agreement; giving the Right to Education. The parents at that convention were elated, they were happy, and had wonderful visions for their children and I just bought into that hook, line, and sinker. So that's how I began to get some positive information really through the Arc and through their guidance and as a result of that and as a result of Shirley's searching we found out that you know children with Down syndrome have large tongues and small palettes and so that's why they have sometimes a speech that's difficult to understand. So speech therapy would probably be a good thing, so when he was about a year old we found a speech therapy clinic that was at IUP [Indiana University of Pennsylvania], the university, that would accept children needing help. And they would be helped by a student wanting to be a speech pathologist, but they would be monitored by a college professor, [a] certified speech pathologist. We got him into that. He got into speech therapy by the time he was a little bit around a year old. He got into swim classes about the same time and the time he was about 18 months old there was a, Shirley found this advertisement for an infant stimulation program being run by the adjoining county, the next county over; Armstrong County. And they would come to the house and work with John and help the parents too, so we enrolled him in that and the lady came for a couple of years and gave me one of the best pieces of advice that I got all through John's life was "Send John to [a regular] nursery school." Because all of my children were older I didn't have any little kids at home with him anymore. They were all in school and John wasn't being stimulated during the day, in the wintertime, by his siblings. So we looked at nursery schools and so that's, I mean the whole thing evolved from Shirley's being such a good mother and finding things for him to do.

The nursery school was a wonderful idea and we investigated regular nursery schools and found out that he qualified in every way. There was only two requirements. You have to have money, and the child has to be potty trained, and John was potty trained because if he smiled Shirley put him on the potty and believe me he was potty trained both ways by the age of two so he qualified very well for a nursery school. He had a wonderful experience there. [There] was great interaction with the other students, the teachers there all loved him. One of them wrote a wonderful poem about him. But before we did that we investigated the one that was being run by the intermediate [unit]. It was special-ed nursery school. In those days special-ed was in basements of churches across the street from the public school and maybe on the other side of the town, really. So we went to observe that nursery school and at the same time the elementary school for special-ed and they had wonderful program; one teacher, three aides and we thought only eight children. We thought, well this looks pretty good, but we realized that the children in the program weren't talking with each other. They were interacting with the teachers and the aides but not with each other and John, having been so stimulated at home with his siblings, and all of the neighborhood kids came to our house because they didn't want our family going to their house with seven children. He was super stimulated, and we thought this could be regressive for him. So we decided not to send him to the nursery school, the intermediate nursery school. The teacher there was upset with me when she/we told her we were going to send him to a regular nursery school, and she told me that I was just one of those fathers who didn't want to admit that his child had a problem, and that's called stereotyping. I had never been stereotyped before. I didn't like it at all, and all through John's life we've had to put up with his being stereotyped and I know that other children and other people with disabilities are always stereotyped, and it's horrible. So whenever I would see that teacher years later I would always make sure she knew of John's accomplishments, so she wouldn't be too worried that I had messed him up.

06:55:45:00 - 06:58:24:00

Lisa: When you thought about kindergarten and elementary school for John, again were you looking at those special programs or did you think that....

Joe: Well, we thought he would go to the same school we visited um because that would have been the place he would have gone and we knew that there were some [good] teachers there because we went to all the classrooms and observed the teachers. Some teachers there were really doing a wonderful job. They looked to be very professional teachers and some of them looked a little bit more like they were going through the motions but, for the most part, they were doing their best and we thought, you know, we'll just fill in the gaps if we have to, but we were kind of hoping or wishing that he could have continued in the regular school. Oh kindergarten, you're talking about. We did enroll him in regular kindergarten. I'll tell you how that happened. When he was born I put him on the waiting list for it because you had to get your child on the waiting list in order to have a chance for them to be accepted. It was a very small school and when I did that I talked to the director and told him that we knew John had a disability, but didn't know the severity so please let him on the waiting list until the time came and we can talk about it. So after his successful venture into nursery school I went to see the director and suggested that maybe we needed to think about putting John in regular kindergarten, and he wouldn't make the decision himself. He let it be up to the kindergarten teacher, so John went to visit the class and that afternoon when I went to pick him up the kindergarten teacher came out and said "Mr. Angelo, I really want John in my class." So she had him there and he was, he enjoyed it so much and everybody [liked] having him; the teachers, the other kids, the other parents, the parents of the other children. But we knew that he was probably going to go to that other [Special-ed] school, but what we didn't know was the university school staff and the intermediate [unit] school staff got together and permeated a proposal and got funding to start a special-ed program at the university school, and it was a very inclusive program. There were only seven grades counting kindergarten and there were 13 children in the program spread throughout those seven grades. Only one class for each grade so there was one-to- three in each class. One resource teacher and one aide and the occasional graduate assistant from the university would get a little bit of training there. It was wonderful. It was unbelievably inclusive; 65 percent with regular children.

06:59: 15:00 - 07:00:26:10

Joe: He had an opportunity to rub shoulders with other children kind of like the kids in his own family and they accepted him and again, just as in kindergarten, the parents of the other children... they even came to some of the meetings and I would give an occasional talk about John, and they would come to the meetings and they would stand up unsolicited and tell the audience yes, my child is in that class and I can tell you that my child has benefited as much being in that class as John has benefited from being in a regular classroom. I don't know why we can't find that kind of program universally across the country because the [PARC Consent] Agreement called for education in the least restrictive environment. The Consent Agreement made it very clear that least restrictive environment meant being educated with children without disabilities to the maximum extent possible and to have the support necessary for them to be able to be there. So we're still working on that uh a good many years later.

07:00:26:15 - 07:01:04:05

Lisa: You said that parents spoke to the fact that their children benefited from being a classmate of John's. How so? What were the benefits?

Joe: Well, John has some gifts that, you know, you just wouldn't believe. He's a very congenial kid. He's very pleasant, very kind. He never shows anger, ever. I've never seen him show anger. And just being around him was a good experience for their children. He was a good role model himself, as well as their children being role models for John to follow. I think that's what she was getting at. John was just a pleasure to be around.

07:01:06:00 - 07:03:20:15

Lisa: Were there ever times, um, when you doubted John's ability, things that he could do and he proved you wrong?

Joe: Yes. Yes and I hang my head in shame because I just gave a speech about being stereotyped and yes, there were, and it was me stereotyping John. He came home from school in about 4th grade, told his mother he wanted to learn to play the piano, and when I got home from work Shirley suggested she get him a teacher and I said "What? No way." And she said "Joe if it were one of the other children you'd already have a teacher for them." So I got on the phone and I got him a teacher and took lessons with him, because I wanted to be able to help him between lessons, and also I wanted to learn to read music myself because I hadn't had much experience with that. So in two years John did learn to transpose the note from the sheet music to the keyboard, play a melody line with his right hand and a harmony line with his left hand and after two years he quit just like the other children did and hasn't played it since. But he showed me, boy! I mean and I felt, I have to tell that story any time I talk about John because I want people to know stereotyping is a natural thing. It's built into us. We have a tendency to do things like that but I was - I felt guilty for a while, but realized that it's part of human nature. But I've never stereotyped him again, and anytime he wanted to start something I was the first one to say "yes, you should sure try that." In fact, when it came time for him to learn to drive when he was about sixteen, I suggested "John you bring the book home and I'll help you learn the answers to the questions so you can pass that part of getting your learners permit and when you get your learners permit. I will sit beside you in the car and try to teach you to drive." But John opted on his own, and in his own wisdom, not to drive.

07:03:24:00 - 07:05:25:00

Lisa: I'm wondering if John's school experience which was so positive from your description through elementary school changed when he went into high school.

Joe: Yeah. I need to tell you something else, though, that happened a couple of times - that happened in the elementary school. John's IEP meetings were terrific. Shirley and I were the experts, and we went into the meeting knowing that they felt that way about us, we were the experts. Not that we were, but they actually treated us that way. So whenever they wanted to make a change maybe in what we were doing and thought there was maybe going to be some resistance on our part, they made sure they had a rationale. For one thing, they did stop the speech therapy when he was in 4th grade because he had not made progress for a couple of years and there were some other things that they thought would be better off for him to learn. And besides he was fairly, clearly understood - the other children and had no problem understanding him so we said "okay" to that one. But the other one was when he was in 2nd grade they wanted him to, at the end of second grade, they wanted him to repeat and the rationale they gave was that he was almost reading at grade level, but not quite, and if we could get him to read a little bit better before he left second grade then maybe his peers would pull him along and keep him on grade level, or maybe he'd just be able to on his own stay at grade level. So we weren't certain that that was the right thing to do but we acquiesced on that one and he did repeat second grade, and at the end of second grade he was reading at second grade level and he did read at second grade level until he finished elementary school. I don't really know how well he did after that. We never got an inkling of what his grade level was but, you know, in the United States about approximately 60 percent of the people don't read much better than 6th grade level.

07:05:26:25 - 07:09:49:00

Lisa: It's interesting that you describe the IEP as a very positive experience. Do you think in all of your time served with the ARC and hearing stories of other parents that that process is as positive for other folks?

Joe: Well, it wasn't even as positive for me after we left the elementary school. I've come to know through my own advocacy work, working with parents and trying to get education programs for their children that sometimes they are the only one in that room that doesn't have some fancy letters after their name and they feel intimidated and don't realize that they truly are the ones that know the most about their children. And so they don't speak up well enough and that's one of the things the Arc was able to do. In the early days I was more or less the Arc president and the educational advocate all rolled up in the fundraiser, and doing it all, so I got experience working with them. In some cases the professionals themselves, whether they knew it or not, really, truly intimidated the people instead of making them feel comfortable. John's first IEP at his junior high school, one of the guidance counselors came in and started spouting off percentile ranks to me. "John is in the second percentile in English and first... fourth or fifth in history, maybe the tenth percentile in math. He's going to have some difficulty." And I asked them "excuse me?" I would say - I did say. "What are the normative groups for those percentile ranks?" And they didn't know what I was talking about, so then I went on to say "Well, you know, you really shouldn't interpret percentile ranks unless you know who the child is being compared with. If he's being compared with students who are going to go on to college, maybe Yale or Harvard or engineering school and you tell me he's first or second percentile I'll say yeah, sure but if you compare him to children with disabilities or even maybe with the general education population at schools with kids that aren't going to college, his percentile ranks would be markedly better than that." Well from that day on, percentile ranks were never mentioned again. I just had that kind of knowledge and understanding through my career and through my work with the Arc that most parents don't have.

That wasn't the first time that [I felt I was being] intimidated. Even before that, when we were talking about his placement in junior high school, the schools, the school district psychologist wanted to put him in what was called a "trainable" class which I knew from my own experience by then meant that they didn't think John could read very well and I said "no" and they said, "Well you're not being very perceptive. You need to know more about this don't you think?" and I said, "In what way?" And they said, "Don't think you should visit the trainable class to see what it is like?" I said, "I'll do that. I don't think it'll change my mind but I will do that." So I did and they were reading but they were reading "men", "women" and "exit." That was their vocabulary that they were reading. I'm sure there were other things but that's what they were practicing that day. John, not too many days before I visited that class, read something from the front page of the paper to me about astronauts, so I called the lady up and I said "No. If you insist on that and won't put him in the other class" they called it the "educable" class, "we will go to due process. We will go to court." And then they acquiesced. And I do believe that her reason for wanting to place John in the educable class was that there had never been a child with Down syndrome before in the educable class. So what was she doing? She was stereotyping and that's what I meant by what I said earlier that stereotyping is one of the most damaging things that can happen to a person.

07:10:12:04 - 07:10:51:10

Lisa: So I wonder, Joe, if you could tell me a little bit about John's experience in high school? You described his experience in elementary school certainly as being very connected with his peers. Um did that carry through to junior high school and high school for him?

Joe: Yes it did, actually, because of John's interests. When he went to the junior high school, the 65/35 ratio got turned around. He was in the self-contained classroom for most of the day and about 30 percent of the day he was in regular classes in something which was called "mainstreaming" in those days.

07:11:18:25 - 07:13:54:00

Mainstreaming is just a kind way of saying "dumping" because he was actually just placed in those classes with no accommodations whatsoever. No aides for him, no training for the teachers that he had, and John was expected to compete with the other children uh without any of those things. Needless to say he couldn't really do that much academically but he still made it through a good number of classes. Some of them were very successful in fact. He was in Home EC and Shop and a course called Tots for Teens where you learned how to be a babysitter and things like that. So he managed to get in those classes and be associated with regular kids but he also had a very big interest in music so he joined the choir, the choruses, and he was in glee club and he wanted to be in a musical. So when he was in, I think it was 8th grade he wanted to be in a musical called Lumberjacks and Wedding Bells. And so he tried out for it. His brother Tom got him ready with a song. Tom was a really good guitar player and singer, and got him ready for it. John tried out and the teacher, the fellow that was producing the play wanted to give John the chance, so John was selected for the cast and the chorus and, of course, John is kind of a ham anyway, so he enjoyed every minute of it. The kids enjoyed every minute of it. The teachers believed John could do it and both the play director and the musical director liked John because John was in the chorus. He had the advantage of having had some musical training and he was, he did very well and so the second time he was like I think in 9th grade he tried out again, and so he was in two junior high school musicals all together and four senior high school musicals. One of the things that makes my heart feel good is, once in a while, we go back to see a high school musical and almost everyone we've seen since John has graduated has had at least one child with a disability in the cast. I like to think that maybe he had something to do with that. So yeah he had not as nice a situation as he had in elementary school but, because of his own choices, it was as inclusive as it could have been in those days.

07:13:54:25 - 07:14:48:00

Lisa: I'm very curious about what you were describing in terms of mainstreaming. Why did the supports fall away at that point for John and other kids?

Joe: They never existed. It wasn't that they fell away. They never existed. There were no inclusive classes in junior and senior high school in our school district and I don't think they were in existence very much anywhere else because people didn't really enforce the court agreement as it referred to least restrictive environment. The public schools could get away with it and so they did, but now it's a little different, you know? We're ready to invoke the law now and so, I think, there's much more inclusion. There are aides and there are supports. Actually you should never use the word "inclusion" without putting the word "supported" in front of it because inclusion without supports is dumping.