Chapter 4: Finding Supports for Robin
Lisa: So Nancy, when Robin was younger, as you had said earlier, there was no education available to her. The public schools were not available to children with disabilities. So I wonder if you can tell me a little bit about what was available.
Nancy: Well, we had been told about Dr. John Bartrum at St. Christopher's, and they wanted to check her hearing, and we had an appointment for 9am in the morning, and it was the day after a very big snowstorm. And she was possibly around three, and we had to park.The parking was on the street parking, and we parked near a snowdrift. We went in at 9am and they said that the machinery was broken. I said, "Was it broken at 5pm yesterday"? Yes, it was. I said, "Why didn't you cancel, knowing there was going to be a snowstorm"? Well, you know, was just -- there was no concern. And Fisher Price used to put out a little radio. Well, you turned a knob and it played nursery rhymes. I brought it with her. It was one of her favorite toys. So I said, "Well she hears this". So then the doctors and the audiologists sat at one end of a long room and started to turn the knob. She was with us, and she heard, and she ran to get it. So they said, well, she has enough hearing. That was the end of her hearing test.
They had a program there for three year olds, and Robbie fit the criteria except that she was ambulatory; they would not take her. Even though she fit every other criteria about her inability to do so much, didn't have much ability for much of anything, would not take her because she was ambulatory. So we had to start looking for where else could we go.
And of course at that time they had Philadelphia Association for Retarded Children, and they also had -- we heard of a program from the Lutheran Church. It was called Kensington Dispensary at that time, it was at Front and Susquehanna. And my pediatrician at that time, Dr. Dickstein, called them both and spoke to the administrators, and said, "You'll take her to Kensington Dispensary".
It was run by Sister Grace, and Sister Catherine was her aide there. It was for half a day. It was basically babysitting. They didn't know much about what to do. We tried to offer some sort of something. You know, they played the piano, they sang songs and maybe some games, that kind of thing. So she went there for several years, until she was -- from four to seven she went there, and then I start looking, you know, because that was the age group, looking for something else that would give her more training, and that took awhile.
And so we were told -- suggested that we go to the Institute for the Human Potential, Stenton Avenue in Chestnut Hill. They called it the "patterning" program, which we looked into, and they said they could take her, and it was expensive. And you went every six weeks for an evaluation, to see if you progressed. And the onus was on the parents, especially the mother, who was always the one taking care and providing the program. And if the child did not progress every six weeks, you were held -- you were chastised. Oh yeah.
And volunteers -- the program consisted of volunteers going through -- it was almost like a swimming program. I always did the head, and then a volunteer would move the arm and a leg on one side, in one motion, and the person on the other side would be the opposite motion. So you were creating almost like a creeping, crawling kind of thing. That was supposed to stimulate the brain into learning, and I used to sing the nursery rhymes, because the adults that came didn't always have terrific coordination, either. So it was to keep everybody moving at the same time, and so we did that.
Academically it was an excellent program. We were given a set of words for her to -- that's when they started that. You would put the words up, say the word "sofa" on the back of the sofa, the word "TV" was on the TV, the word "refrigerator" was on the refrigerator -- you had signs all over the house, and that's how she learned to read. And she could recognize over 200 words by the time we finished. She would point, and we would do small sentences, and I would test her on it. First we tested her on two words at a time. That's when she could hear, and then I would give her maybe a three or four word sentence, and ask her, you know, where is the word for this, where is the word for "daddy", where is the word for "is home," that kind of thing, and she did it. And at that time, she was learning some language, and we had other things that she learned -- sensory perception -- at that time.
She used to pick up things with her hold hand, and we would take turns. My husband would come up, say from the office -- we had our office with our home -- and while I was preparing dinner he would teach her how to pick up a penny, or pens, or like bobby pins, things like that, with her thumb and her index finger, the pinching movement. She learned how to string beads. We realized everything took six weeks for her to learn.
I would take her down to its simplest component, and each thing we had to teach her each step of the way. So it would take like six weeks to learn to do a whole string of beads. It was very good that way. And thinking of all the different things that we did, it was a full program. We had to teach her how to creep and crawl through a box. We had to make a box, and with certain dimensions.
Also she had some visual problems so we had to get a -- I'm trying to think back. I can't remember the thing we did for her eyes, to -- she has Keraticonus with her eyes, which can lead to blindness. She also has strabismus, which is muscle weakness in one eye. So to get the eyes together, we had to do certain eye exercises with her.
It was a full day program, and the patterning was done four times a day, seven days a week, no matter what. I also was fortunate enough to get some teenagers from Northeast High School, put an ad in the newsletter there, and got some kids to come over, and they were absolutely terrific. They came through in all kinds of weather. They helped to build the box and they were just devoted to her. And it was something new for them, too.
So at that time is when JFK was president and this was where everybody wanted to be active socially, to be active helping people who were less fortunate, and it was about five or seven of them who spent a few years with us.
13:04:21:16 - 13:10:40:04
Lisa: Nancy, I'm curious. A program like that, was that made available free of charge to families?
Nancy: No, no, no. At that time, I think the initial was about $500 and every time you went it was $150, every six weeks it was $150. There were people who came from out of state who did get some compensation, traveling time, that kind of thing. In Pennsylvania, got nothing. This was out of pocket, and this went on for five years.
And to have got to a point where she wasn't making that much progress, and they wanted us to do some things that I questioned, and didn't feel was in her best interest, and I spoke to physicians about it. They wanted me to get a gag reflex out of her, putting a tongue depressor in her mouth, doing this 12 times a day, seven days a week, and I said -- they thought it would strengthen the muscles in her mouth for speech.
I spoke to her primary doctor and he said, no, no, no, no, you'll undo all the good you've done. They wanted me to take her into a closet and put on a red light every so often, and I thought, this is not going to help her eyes. I spoke to the ophthalmologist. He said you can cause a seizure in a child who's never had a seizure. So I thought, well if I'm cutting out two big parts of their program, and it's costing me this kind of money, it doesn't pay. So I stopped.
But during that time, one summer I saw an ad in the local newspaper, the Northeast Times, little, little piece, said do you have a child with -- well, disability, and not able to do a lot of things like eating by themselves, and walking, and what have you -- didn't make any difference. They wanted to try a summer program, at the Longfellow School in Bridesburg. So I thought, well, I'll call and find out what it is. It was a music teacher. It was a parent, Leona Fialkowski, who I have blessed all my life. They had ten children, two of them were handicapped, and who had been trying for 15 years to get some services for her children. She was able to convince school system, former Mayor Dilworth, and Reverend Henry Nichols, minister, who were with the school board, to give us a chance. So we met in the basement of this school in Bridesburg, with very little equipment. But they listened, and we were able to continue as a program in -- during the regular school year. Still went for half a day.
The principal of the school was so supportive of us, and then we started having teachers. At that time, the special ed teachers didn't work with children at this level. They called it the multiple handicap class, and the only criteria was that an adult had to come with the child to help. You usually work with your own child, and we were taught also how to work with them, how to speak to them, how to give your directions. Also learn not to speak, have conversation over their heads while you're trying to teach them to do whatever the skills that you were trying to impart to them. And learn to teach by myself, and did some teaching, you know, at that point. Learn to assess a program, so that if I came into another group I could see right away.
People came from all over the state to see what we were doing. There were even some people who came from Ireland, who helped -- for whatever reason, they were in the United States, they came to see what we were doing, because of working with children at that level, they were not accepted in the school system, because they were not -- at that time you either had trainable or educable, and these children did not fit the criteria.
But we also learned that -- well I felt this way, and I think the others felt the same way -- all these children were our children, they were my children, too. They still are, and when a child needed a hug, it had nothing to do with religion or race, it had to do with the child who needed a hug. In fact, our class also worked with some so-called normal children, who might have had some difficulty in school with behavior.
We had one little boy who came in, and all the other children, by the way, in this school were bused in. And he came in and he learned that he was more capable than children in his class who were older than he was. He must have been about nine or ten. It's a bit of a discipline program. And he became a teacher, an aide, in the class.
His behavior changed dramatically. He was the one who was in charge, he was the one who taught, he was the one who was capable, and so at the end of -- in June, we had a party for him, a thank you party, but when he went out into the hallway, he went back to his struttling a little bit, but his behavior was still changed. He straightened out.
So we all did well by this, and by that time -- but I had gotten permission from the patterning program to attend this program. So I did patterning, and did all the programs there, and then still took her there because she formed friendships, you know. It was a structured program, and until the Right to Education Act came about, we then went into our own school districts, when she was fifteen.
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About Nancy Greenstein
Parent, Advocate, Chairperson of the Board, PATH
Community Collaborative, Education, Embreeville, Employment, Institutionalization, Longfellow School, PATH, Patterning, Pennhurst, Philadelphia Council of Concerned Families, Siblings