You Love Me!! Don't Accept Me As I Am
Feuerstein, Reuven; Rand, Yaacov & Feuerstein, Raphael S. (2006). Jerusalem: ICELP Press
|Reprinted with the permission of Reuven Feuerstein|
Peetjie is a fourteen-year-old girl with Down Syndrome. She is small for her age, standing barely five feet tall; she is solidly built but certainly not fat; she has long hair, which she prefers to wear in a pony tail. She wears jeans and loose sweaters—she hates skirts; they are too awkward for bike riding. She picks out her own clothes. She looks charming. She knows what she wants. She is an easy-going girl, always cheerful. She attends a local elementary school with eleven-year-olds. She participates in gymnastics and swimming, plays the clarinet, and is able to ski.
She is very busy. She has to do her homework every day; she belongs to clubs and has hobbies; she is a girl who noticeably enjoys life. She loves to go to school and does not like to miss any activities. She is a girl about whom Professor Feuerstein recently wrote: "She makes more from what, even I, an optimist, expected!"
She was born in 1978. The initial years of her life were far from optimistic. Wil and I were both thirty-six when she was born; she was our first child. We got married late in life.
Everything was arranged. I was supposed to keep working. We had a baby-sitter for her to go to during the day. The nursery was finished. Wil had made her bed. I had embroidered all the little sheets and pillowcases. The baby carriage was ordered; the stuffed animals were ready. I had a perfect pregnancy, worked until the last day, was rarely nauseous, and had not missed a day of work. Because of my age and my tilted uterus I was under the care of an obstetrician and was to give birth in the hospital (where we also worked).1
Everything went according to schedule. In the evening we visited my younger sister, whose birthday it was. I took a shower after we came home and we started off for the hospital. The contractions came in rapid succession. We were safely in the delivery room when our daughter arrived. She was born in the amniotic sack and they immediately took her away to at. tend to her. For a split second I thought that I had given birth to a healthy daughter. Then Wil came and told me she was Mongoloid. The diagnosis of "Down Syndrome" was so clear that the nurse was able to see it right away. Her tongue hung passively out of her mouth, small hands, nose, forehead—all the characteristics were present. The attending pediatrician could only confirm this.
Our first reaction was denial: "No, it can't be." And after that, "How bad is it; what does she look like?" Then nothing at all. They laid her next to me, but it was not my child.
The pediatrician came the following day to talk to us. We asked, "What can we expect?"
"That can vary from a child who will never recognize you to a child who will learn to read a maximum of a few words."
Twelve hours after the delivery we went home without our child—completely devastated. We wanted to see no one and speak to no one.
Naturally we had picked her name, Peetjie, beforehand. It would have been Theike for a boy, but Peetjie for a girl—her first two baptismal names. Petronella Elisabeth, shortened. While Wil went to city hall to register her birth, I got up and took everything out of her room, stripped the bed; I took everything out. And then the nightmares. In my dreams I always saw a child who was dancing in the hallway in a blue pleated skirt. She had new shoes on and was waiting for papa to come home to show them to him. Then I woke up and realized that there would never be a girl in a blue skirt dancing in the hallway. And then there was another dream: our living room was changed into a large box with wooden bars, completely empty with the exception of a crying child.
After a week, we went back to have a look at her at the urgent advice of the pediatrician. I did not want to hold her. We only looked and politely asked the nurse, who was giving her a bottle, how Peetjie was doing.
She stayed in the hospital for six months. She drank poorly and was very passive. Once we went back to work we visited her occasionally. We noticed that she did not make any sounds; she didn't even cry, except now and then a shrieking sound when she was in pain. Even then she already had trouble with constipation.
We requested that the hospital look for an institution for her. The placement happened when Peetjie was six months old. Now that she didn't have to come home, we were gradually able to accept her better. We visited her every day and took her home on weekends. We began to talk with others about her and no longer hid her. After a while the institution became our day-care center. We dropped her off when we went to work and picked her up again before we went home. She was gradually becoming our child. We began to direct our activities toward her: to activate her, to rock her, to get her to keep her tongue in her mouth, to keep her from stuffing a rag in her mouth.
After much consideration, we decided to take the chance of having another child. We decided it was well worth the risk and that the new child's development would not be affected by its sister's handicap.
Werny is fourteen months younger than Peetjie. During the maternity visit, Peetjie sat nearby and also got gifts. Peetjie appeared not to function as poorly as was initially thought. When she was a year old she recognized people and could sit with help. She was incredibly passive—very satisfied just to play with a rag, which she liked to stuff in her mouth. In order to get her to crawl (it was more like moving forward over the floor), we had to place the rag far enough away from her that she was forced to crawl to get to it. When she was around fourteen months old, eating was very important to her, and so we used food as a reward. We taught her to walk by giving her a bite of banana after each step. She was about two years old. She did nothing, and I mean literally nothing, on her own.
Peetjie was placed in child care when she was just two years old. Twelve years ago the future of a child with Down Syndrome (DS) was determined at birth: day-care center; ZMLK2; after this, a day-care center for the mentally handicapped. We didn't expect anything else.
We did intensive training with social, motor, and verbal skills in order to have a pleasant home environment, for Werny as well as for Peetjie. Peetjie had to eat properly, stay away from things that were not hers, wait 1 her turn, occupy herself, obey—the same demands we made on her sister, I each at their own level. From the time Werny was three and Peetjie was four, Werny was better than her sister in all areas. We treated her as the oldest. She was also taller at that point. They got along rather well. They napped and slept together in the same room!
We deliberately tried to be very clear with our children. They were (and are) allowed to do a great deal, but we were consistent: what is not allowed is not allowed. We only forbid something if it was really not allowed, but then we stuck to it, even if we had to repeat it ten times. Our children did not always have to put away their toys, they could play anywhere in the house, but they were not allowed to tease animals or to have sweets without asking. It was necessary to be completely clear with Peetjie.
In addition, whenever we went somewhere we specified what was allowed. Grandma was of the opinion that Peetjie could eat as much pudding as she wanted, but I did not allow that. We noticed that while there is a tendency to allow too much with these children, they are also viewed much more critically.
Things went moderately well with her at the day-care center. Other children with DS who were in the same group definitely functioned much better. When she started at the day-care center, she could not walk, was not toilet trained, and did not talk. But she was cheerful and alert and interacted well with the people she liked.
She was there for five years. As we look back now, we realize that a tiny-tots play group followed by a standard preschool would have been better. The first intelligence test, administered when she was two and a half, revealed an IQ of 52—an acceptable outcome. She had achieved the same as a one-year-old.
In Peetjie's early years, quite a few things went wrong medically. A severe hearing loss was detected. Her hearing threshold was 80 decibels (a loss of 60 decibels). She could hardly hear in the day-care group. It took more than a year before she could hear reasonably well. When she was six years old, she was referred to an optometrist at our request and was given her first pair of glasses. But they neglected to tell us that in spite of the glasses she had a hard time seeing things that were far away.
We continued to try to stimulate her at home: talking, and working on social behavior and gross and fine motor movements. She was particularly slow verbally and with fine motor movements. The fact that her speech was poor is, after all, not surprising; in addition to her DS, she had severely reduced hearing. And the fact that the fine motor movements were slow to develop is also not strange, since she sees very poorly.
When Werny went to tiny-tots gym class, we allowed Peetjie to participate too. I stayed near them the whole time, just like the other parents. To our great astonishment, Peetjie was allowed to participate in a competition and did well.
When Werny changed to gymnastics, we did not register Peetjie. People asked us: "Why doesn't Peetjie participate?"
"They think that it's too difficult for her."
"Let her try it anyway! Why not?"
They went to gymnastics together for a year, after which time Werny switched to a more advanced group. Peetjie was so into it by then that she continued by herself.
When Peetjie was five and a half years old, I worked more intensively with her on her cognitive skills. We noticed that Peetjie performed less well at the day care than at home: her drawing was worse, she needed help getting dressed, and so on. Werny began to count and write. We allowed Peetjie to join in. She quickly counted to three. She had learned to write the letter P and to draw on a vacation postcard by herself. To our amazement, she pointed to a P in the newspaper and said, "I am Peetjie." We practiced fine motor movements with her using inlaid work, embroidery, lacing, and weaving. We let her draw and color. We started practicing writing letters and numbers—as much as possible with her sister, who was always just ahead of her. We hoped that she could learn to count to ten, and perhaps learn to read and to write a few words. When you can count to ten, you can dial a phone, operate the knobs on an electric range, use a coffee maker. I made up a lot of working materials myself and we read all the books we could find.
At this point in her progress we remembered a TV program we had seen some time ago about a professor from Israel who worked intensively with children who had DS. After watching the program, we had the feeling that "this is for advanced students, not for Peetjie." We now wondered whether perhaps the professor was right. We tried to get information about his teaching method, but were not successful. The reaction we got was that the man, Professor Feuerstein, did not accept children as they are; that the Netherlands also has good methods; that he engages in unethical practices—he operates on children; and so on.
The day-care center discovered that I had been working intensively with Peetjie, and they reprimanded me for it. Naturally, I was doing it all wrong, and what was the point? What did I want? I got the familiar advice: accept, give it time, and so on. I asked what they had against teaching her to count, to read, to calculate. If that was what I wanted, I was doing it all wrong, because she would never be able to master math and reading. They gave me other materials to work with, but at the same time we continued to teach her to count and read, and that appeared to go well under the circumstances.
Our intensive work with Peetjie was certainly not being appreciated, and in a heated discussion at the entrance to the day care I was told: "What do you want anyway? Do you think that you can get her into an MLK3 instead of a ZMLK?" I was so furious about the discussion and where it was taking place that I answered without thinking about it: "Who knows, maybe I do."
Our criticism of the day-care center became more serious. We asked repeatedly about working in a more structured manner, setting requirements, and requiring consistent behavior. We were not in agreement about the testing methods. The results were conflicting. One outcome showed that Peetjie could draw a doll and one page later it would show that she could not draw a doll. We insisted: "She can do that well. She has been doing that for quite a while."
The reaction was: "She didn't do it at the time of the test."
"Aren't you going to repeat the test?"
"No, that's not allowed. You must ask the questions precisely, and the answers are also determined." Then we heard to our amazement that the test had to be repeated.
"I thought it couldn't be repeated?"
"Yes, but Peetjie refused to talk during the entire test, making it impossible to determine the results!"
Because I worked, we needed to know the new school's hours and vacation times. We made an appointment with the ZMLK school, the school she was supposed to go to. A beautiful school, spacious, sunny, beautiful location, tranquil atmosphere. But hardly any education; only for the older students, and then at a level that Peetjie had almost reached. We were shocked at the behavior we saw. We did not think that she belonged there; not cognitively, not socially.
We made an appointment with the MLK school and told them about our child. We looked at the first grade and determined that Peetjie would have no trouble keeping up.
In January she was tested at the day-care center. Beforehand, we practiced intensively all the tests I knew. During the test, we sat at the other side of a one-way window. The test was given in Dutch, while we spoke dialect to her. Our dialect was also spoken to her at the day-care center. When we remarked on this, the answer was: "Only those children who do not understand Dutch at all are tested in the dialect."
The tests that we had practiced with her went well. Tests that I did not know, for example, a test with little blocks that were half white and half black, were not successful. She did not understand at all what the tester wanted. In addition, the answers were interpreted strangely.
"What is a shoe?"
"I am not a shoe, I am a boot," and she pointed to her boots.
The next day, when I reproduced the same blocks at home and quickly explained to her what was expected, she could perform perfectly. We had frequently mentioned that Peetjie could not do things that she had not been taught to do, but this could not be taken into consideration.
At the end of January, we were invited to a conference. Her IQ was determined at 62, a fair improvement over the 52 of a few years ago. The school recommendation was a ZMLK. The reason: she had Down Syndrome. But we knew that an IQ of 60 was sufficient to gain admission to the MLK.
"Why the ZMLK? You know that we want an MLK."
"We don't think that's possible. We don't know of any child with DS at an MLK."
"But haven't you seen the book about the English boy (Nigel Hunt)?"
"Yes, but I don't believe that. I've asked around, but no one knows of a child with DS who goes to an MLK. But you have to decide for yourself which school you want to place her in."
We agreed, and enrolled her at the MLK. After all, she had an IQ of 62. All the data were gathered. We would be given further details. We had the impression that she was admitted.
We received a call for a medical examination. The doctor paid no attention to how Peetjie was physically, only to what she was able to do. She had to draw on a very small piece of paper and answer all kinds of questions. When we left, he said: "We will send you the results." We found this so strange that I called the school the next day. Then we heard what we could expect: a social worker, a psychological test, and a scholastic test.
"But she has already been tested!"
"Yes, but we are going to repeat them, and then it will be decided whether she will be admitted."
So one morning I had to bring her to the school again, without knowing why. Not until we got there did we find out that she was going to be tested. I urgently requested to be allowed to stay with her. That was obviously a strange request. It was approved, but I was not allowed to interfere with anything. Two men took Peetjie to be tested in a small room that was located next to the gym. There was a lot of noise. It was bothering Peetjie because of her hearing trouble.
"Yes, it is an inconvenience that the office is so close to the gym."
The test began. They continued with each part of the test until Peetjie could not answer a number of questions. Then she became very unsure and reacted very little. Among other things, she was asked: "What is an association? What is a diamond? If there are eight trees and I cover up three, how many are left?" Peetjie reacted less and less, no longer looked at the testers, and sat on her chair hunched up. In addition, she didn't give answers to questions that she knew the answers to. At that moment I had had enough. I asked whether I might intervene, and to my amazement this was permitted. I went to Peetjie and took hold of her. "Come now girl, you know that! Wipe your nose and then we'll start again. Do you know what you're supposed to do?"
"Yes." And she did what was asked of her very nicely.
There was a short break. I got coffee; Peetjie got a drink in the restroom.
Result: rejected, and the recommendations of the day-care center were decisive. That meant the ZMLK.
No one understood that we still had a problem with that. Is that where all DS children were being placed?
"But she will learn nothing there! Surely she can learn to read and write."
Then we asked if she could get into the advanced reading and writing group.
"No. As a seven-year-old child she can't be placed with children who are twelve and thirteen years old."
We were told we took everything too seriously. "Check it out first." That's not what we wanted. Once there, it would be impossible to transfer Peetjie to another school. During the day-care center time we had had many appalling problems because Peetjie imitated the other children. She had shouted, she had hit, she had stamped her feet, she had fidgeted. Each time we had to break her of the habit, and then another strange behavior would replace it. If she went to the ZMLK, we would end up teaching her at home and she would play at school. A few weeks earlier we had met with other parents who also had a daughter with DS. She was eleven years old. She had been to the same day-care center. They had also requested the MLK, but they were refused and had been forced to accept the ZMLK. Now their daughter asked them repeatedly to teach her to read and write. When we heard that, we knew for sure we should persevere.
We went back to the day-care center. Their recommendation determined the outcome, so if they changed their recommendation, the request could be looked at again. We were especially dissatisfied with the last test. Her poor hearing had not been taken into account, the test was given in Dutch, the answers were strangely interpreted. Someone from the day-care center was willing to go to the MLK with us. They suggested she stay there another year. But she can't learn anything else there! After a long discussion, we received an offer to let her take part in a one-week trial at the MLK. We did not accept that; Peetjie couldn't prove herself at a strange school in just one week. After persisting for a long time, we were offered a trial period up to the fall vacation.
Naturally we had many doubts about whether we made the right choice. Everyone advised us against it. I laid awake at night. To do or not to do; for the MLK, against the ZMLK. But everything she learns is to her advantage. To count, calculate, write, and read would make a world of difference, and would be particularly useful later in life. Against all advice we decided to enroll Peetjie at the MLK.
Not much changed. Peetjie was once again picked up and brought home by bus. I was not allowed to work with her at home, but I didn't take that too seriously. We didn't hear anything when the fall vacation started; we didn't ask anything. We received her first report card at Christmas time. The teacher was generally positive. We were allowed to work with her at home and received materials from school.
The first year went well. Peetjie was able to keep up with the class. In the document Special in Special Education, which we got from her teacher, we read that acceptance at the MLK was quite unusual. All other MLKs in the area probably would have refused her.
That year she started swimming lessons with her sister at the Sport-fondsen pool. We stayed with them. Peetjie did not hear the instructions well and was not successful in converting them into good strokes. For this reason we took her swimming every weekend. When you were with her in the water, you could allow her to feel what she needed do. After three months, Werny got her A-certificate. "It's my turn next," said Peetjie, and she did it. After that she got her B-certificate. It was difficult because she had to dive in order to swim under water. While we were teaching her to dive one weekend, some people came up to us and asked, "Why do you demand that of her? Leave her alone." How tiresome those types of remarks are. No one realized what it would mean to Peetjie if she did not learn: no certificate for her, no swimming, but a certificate for her sister! Much later the same people came up to us: "Sorry, you were right. It's good that she can swim so well."
After that, both girls became members of a swimming club. They trained intensively—three times a week. Peetjie was never sick while she was involved in sports; before that, she got an infection two to three times a year for which she had to have antibiotics. She was also less troubled by constipation and her figure improved. It's too bad she had to participate in competitive swimming in her own age group. Two years below her age group would have been better, but that wasn't allowed; the other choice was to swim with handicapped children!
Participating in swimming and gymnastics was important not only because of the sport, but also because of being together with "normal" children. In the beginning we always remained nearby in case problems arose. Peetjie was always regarded differently than the other children. When all the children of her swimming group pushed each other into the water, Peetjie was the only one who was reprimanded for it. You are so dependent that you don't react to that, no matter how unfair it is.
The following school years were difficult. We had too little contact with the school and we obtained insufficient materials. In addition, there were differences of opinion. For example, we said, "Peetjie cannot read the blackboard; the writing is too small and too crowded." The teacher said, :|
"She can read it all right, but she doesn't know her material." We made an appointment with the optometrist and told him that she attended a school with lessons given in the classroom, that she could read and write, but that according to us she could not see the blackboard.
She received another prescription for glasses. In the meantime the teacher had moved Peetjie into another language class that was at a lower level without us knowing about it. "She is happier there." That was true because she did not get any assignments from the blackboard any more. Later, we found out that even with her new glasses she couldn't read the blackboard.
Each report-card discussion, each test was threatening for us, because the following was always repeated: "Until now she has been able to keep up, but you know that when she can't keep up any longer, she must leave the school." In addition, the following was constantly repeated: "She can do this now, but can she take the following step? We doubt it." When she was able to count, her math ability was questioned. When she was able to count to ten, it was doubted whether she could count past ten; she would certainly never learn to multiply.
"Don't bother teaching her the multiplication tables; even if she learns them, she will never be able to apply them."
The same with reading. "Can she understand what she reads?"
"Yes, we have tested that and she can repeat what she has read." Or, "Can she answer questions about what she has read?"
"Yes, we have tested that."
Each discussion ended up going nowhere. Had she reached her potential? Where should she be placed? What if she could not keep up at the school and had to leave? It was a difficult time. There was always that threat.
Peetjie talked poorly at this time. She did not use proper sentences; in addition, she had difficulty talking about herself chronologically. She always tended to immediately answer yes, whether to avoid the question or to please the questioner, we didn't know.
Many socially disruptive students were at the school. They were wild and bustling on the playground. There were many fights, a lot of confusion, and name calling. Never play. When there was a fight, Peetjie was frequently blamed. She could not or did not defend herself from those who were misbehaving. And if we said, "Peetjie does not retaliate or kick, that's against her nature; furthermore, she does not do that at home or at her clubs"—that I did not help. The other children said that Peetjie had done it, thus Peetjie got I the blame. Peetjie later assumed the same behaviors, even outside of school.
She was a scout and was allowed to participate one weekend. She got mad about something and behaved like the children had on the playground. It was still being discussed three years later when I enrolled her for camp.
It was too bad that the people in the neighborhood hardly knew Peetjie. She got on the bus at about quarter to eight and came back at about four thirty. She never went to the neighborhood playground or school.
Whenever we took Peetjie along to a festivity, people looked at her strangely and even stared at her. She looked pretty, but had the deviating DS appearance: often the mouth slightly open and her tongue on her lower lip, small eyes, and large glasses that always slipped down her nose. Peetjie must have sensed that she was stared at.
Things went well at her clubs; we stayed nearby the whole time. We acted as assistant trainers and went along to the competitions. We didn't have the courage to leave her completely by herself. If something went wrong, it was due to her Down Syndrome! Peetjie had the unmistakable ability of knowing when something was demanded of her and when it was not. If she noticed she could trick somebody, she could not pass up the chance. She managed to tell a swimming coach, who told her to swim four laps of the breast stroke: "I swim what I want to swim." He was still laughing when he told us about it.
We constantly had to make sure that sufficient demands were made of Peetjie. There was a tendency to go too easy on her in many things. Only when we intervened was she allowed to really participate, and then her performance suddenly improved. In gymnastics for instance, she was afraid to jump, afraid of the beam, and afraid of the high placement of the parallel bars. The coach would not allow her to do any of that, but we wanted her to. If she did not do these things, she couldn't progress to the next group with the other children, and that would really bother her. In retrospect we understand why she disliked that equipment—because she wasn't able to see well.
Peetjie was nine years old and in group 34 of the MLK. We were very satisfied with her academic progress. Socially she did not do as well. And then the eternal threat: "If she can't keep up any longer, she must leave the school."
In the meantime, we had found out that there were children with DS at the elementary schools. But they did not use the same educational materials as the rest of the class. That was not good for Peetjie. However, to keep up with a group, to belong to it, to do the same things, was very important for her. She needed an example that motivated her to improve herself. We had already noticed that at the day-care center. If she was the best in a group, she went backwards rather than forward. At home, Werny is her great example. Whatever sports Werny plays, she also plays. She was always asking if she could go to the same school as Werny.
We were still looking for information about Feuerstein. We constantly wondered whether his assertion that children with DS have more ability than has been thought was correct. It was obvious that Peetjie could not figure out anything by herself. However, if I explained something to her, such as new addition problems, she was indeed able to keep up with me. Combining, determining significance vs. insignificance, establishing a connection, she never did those things spontaneously, unless you worked them through with her. At the time I frequently said: "I can teach Peetjie a great deal—to write, to read, to calculate—but how am I supposed to teach her to think so that she can do things for herself?"
By coincidence I received the address of Stichting Down Syndrome (SDS; a Down Syndrome foundation). I called them and asked, among other things, for more information about Feuerstein's teaching method. I was given the telephone number of a woman in Leiden. She was very enthusiastic, and immediately invited me to go to Kortrijk, Belgium, the following day, to a school where a method developed by Feuerstein was being used.
There we observed two lessons being given to girls between the ages of sixteen and eighteen; they were learning impaired but did not have DS. I was enthusiastic. I found the teaching method very appealing. They did baffling things in teaching learning-impaired children. I received the address of the Belgian course coordinator. Despite my persuasive powers, I was not successful at getting into the Instrumental Enrichment course in Belgium. "But why don't you go to Israel? A course begins in a week and a half; there should be room for you."
"In Israel? I can't do that."
Wil asked if I had established contact with Belgium. I told him that I had not succeeded in getting into the course and that I was told: "Why don't you go to Israel?" Wil's response was: "And why don't you go to Israel?"
After we weighed all the pros and cons, we called for more information and decided to go to Israel. We were afraid that Peetjie might have to leave the MLK. This was our last chance; then we would have done all that was possible. We contacted the MLK. They didn't dismiss the idea, but didn't find it very sensible either. To our amazement, they said: "Why do you want to go there now? Things are going well. She is keeping up." We decided to take the course. The lessons in Kortrijk had been an eye-opener for me; the way in which the students were taught to think caused us to realize that we had always missed the mark with Peetjie.
There was still room in the course. We booked a hotel room and a flight to Israel. A week and a half later our entire family was there. The course lasted two-and-a-half weeks. We had three weeks off; since we were all together we could take a little family vacation. We stayed in the hotel where the course was given.
People attended the course from all over the world: the United States, South Africa, Canada, New Zealand, the Ivory Coast, Spain. The course was taught in English. Many could not follow or answer questions. After a few lessons, I was convinced that it was too difficult for Peetjie.
We ate with the other course participants. Feuerstein was usually present in the dining room, where he made the acquaintance of our daughter. Although they could not talk to each other, he and Peetjie immediately became friends. Another mother attending the course had brought along her son. She told me that he was to be tested at the Institute by Dr. Feuerstein. "Should we do that too?" we asked ourselves. We decided not to. We were afraid that Peetjie had maxed out, and what sense did it make to hear that? Then we saw Feuerstein's testing method. What a difference from what we had seen in the Netherlands! So challenging, so child friendly. Because of his way of doing things and the manner in which he dealt with the children, they performed much better than expected. We went to see him after all and asked if he would test Peetjie. We were to come to the Institute after the course was over. She would be tested then. Those were the days we had reserved for a family vacation by the sea.
The Institute is housed in an old mansion; rather busy, somewhat disorderly, with small, crowded rooms and people running around everywhere. We had to wait in the hallway. They came and got Peetjie. A little later they called me in. Peetjie was sitting next to Feuerstein; he was testing her. She had to draw a circle, a square, a diamond. She was obviously doing very well. Then she had to answer questions and count from one to twenty and back. Feuerstein was enthusiastic and astonished at Peetjie. We were exuberantly praised about the way in which we had brought her up. "I have never seen anything like it. You are an extension of God." We were stupefied. We had done things well? In the Netherlands we had only heard how poorly we did; that we kept her too busy; that we saw everything wrong. And now all at once we were hearing the opposite; for the first time, after all these years.
"And has she maxed out?"
"Maxed out in what way?" We explained what we meant. Nonsense, he thought. Even people with DS can continue to learn. Where did they get that notion from in the Netherlands?
They examined her face. We were to see Professor Wexler, a plastic surgeon, because her lower jaw protruded too much. She had an underbite. And they needed to look at her eyes. Again someone was called to examine her. He had such a nice Dutch girl with him. Feuerstein continued to test her. Peetjie did amazingly well; she clearly did her best. He was very satisfied. "How long are you staying?"
"We have to leave on Sunday."
"That's impossible. You must stay longer. I want to test Peetjie more extensively. I must know precisely what she is able to do, whether there are any gaps. Delay your departure."
"We can't do that. We have to get back. We have to go back to work."
"What's more important, your work or your daughter? Call and tell them you will come back later. What school is she going to?"
We explained what the MLK was. That was a school for the handicapped. She must go to a regular school.
"That's impossible in the Netherlands. There, a DS child at an MLK is already unusual."
"She must go to a regular school at two years below her age level."
After this, Yael, one of Feuerstein's associates, continued the testing. I translated. In the beginning I was less clear with Peetjie than usual, until I noticed that Peetjie started to trick me. I told her clearly she must stop that. That helped. Yael asked later: "Who taught you to treat her like that?"
"But the way you treat her is simply perfect. She has such wonderful behavior." (She behaves so well.)
The tests were a relief after those in the Netherlands. They did not test what the child knew, but what she was still able to learn. Before she began a new test, they determined whether she would be able to do it. If not, they took the time to clearly explain the instructions. Only then did they actually try the test. If the test did not go well, the child received the instructions again. Peetjie started to work too quickly and impulsively. They had to stop and I had to tell her that she must look at everything first before she gave an answer. In the Netherlands, they always let her go on when she made mistakes. After the correction she did well again. In addition, throughout the testing they told her how good she was doing. When Peetjie got tired, she had to go on: "You can do it." They went on for a quarter of an hour, and then stopped. In retrospect, we realized that they were testing her endurance and her ability to persevere. Feuerstein came in during the testing. He had a discussion with Professor Wexler. "Who is that?" we asked Yael. The plastic surgeon! We were bewildered, for we did not intend to have her operated on. Out of courtesy to Feuerstein, we decided to allow the examination anyway. First we tried to find out whether we could postpone our flight, but that was impossible. After this we went to Professor Wexler at the university clinic of Jerusalem.
He looked Peetjie over thoroughly. "The nose, I don't know—no, she is a Dutch girl, not a Jew. Perhaps the corners of the mouth up."
"And the tongue?" we asked. That was so self-evident that he would not even discuss it. He used photographs to show us how he performed the operation. Would she be able to talk better after that? He couldn't comment on that; that was not his department. But she would be able to eat better. That wasn't very important to us; she already did that well.
We went back to the hotel, having made up our minds not to have him operate. She spoke for herself, and she could teach herself to keep her tongue in and keep her mouth closed. Werny thought that perhaps we should tie a band around her head at night so that her mouth would stay closed.
At night I lay awake and went over the whole day in my mind. The success with Feuerstein, how good she did with the testing. The visit to Wexler, his advice, our decision. Her long tongue; her mouth, which was so difficult for her to keep closed; the idle chatter; her jaw, which protruded out more and more; her crooked front teeth. Her external appearance, which made her Down Syndrome so obvious—especially the tongue. Then I realized all at once how discriminating we were being. If Werny had such a large tongue, what would we do? Operate, without a doubt. If it was as difficult for her to talk, if she had a tongue that would not fit in her mouth, then we would not have thought about it for very long. We would have gotten help for her long ago. I woke Wil up. We talked it over and decided we would have her operated on when we came back to Israel the following year. Not to hide the fact that she had Down Syndrome; that would still be apparent even after the operation. But why should it attract so much attention? We realized how much trouble her tongue must be.
On the following day we went back to the Institute to look into further testing. Feuerstein did not ask "Are you going to have her operated on?" but "What are you going to have operated on?" For him it was an established fact that Peetjie had to be helped.
Yael continued to test her. A speech therapist also worked with Peetjie. No work was done on Saturdays. On Sunday morning they continued and the test results were discussed with us.
Feuerstein was very satisfied. We needed to do the Instrumental Enrichment (IE) program with her as well as extra exercises to train her memory. Her short, auditive-illogic memory (the retention of words that have no connection with each other) was poor. We had to work intensively with her. And we had to believe in her. "Never say 'I hope'; you have to believe." When we left, he said: "I have a problem for you."
"What is it?" we asked.
"She must go to a regular school. By the time you come back next year, you must have found a regular school for her. Spend the following year on this." We left it at that. We saw it as impossible.
We flew back on cloud nine. After all the years of hard work, we had heard for the first time that we were doing well, that we need not be afraid that she would max out, and that Peetjie could learn a lot more if we worked harder with her and believed in her. We received the shot in the arm that we needed so badly: somebody who stood behind us, who helped us with practical advice, who considered the situation realistically, but looked at her future positively. If I could only teach her to think! Then her possibilities would be even greater. We had the instruments to work on that. We were motivated to go further. We could refer anyone who didn't agree with us to Professor Feuerstein.
We came back from Israel full of enthusiasm. It was still summer vacation, and we began work on IE right away.
Each of the IE program's fourteen instruments consists of a sizeable number of worksheets with teacher instructions. During the training, we received lessons with these worksheets and followed the course at a rapid tempo. The final goal is the improvement of the thinking processes. This is done in three phases: input, elaboration, and output. The cognitive process works well only if all parts of the phases function well. The input phase, for example, involves working accurately and systematically, placing things in time and space; the elaboration phase involves, among other things, dividing items into categories, comparing; in the output phase one must look at which form of communication is the best, how things must be presented so that others understand it.
Each instrument involves a number of these processes; the first instrument, Organization of Dots, involves, among other things, working systematically and accurately, making agreements. In the instrument Orientation in Space one learns to see relations, spatial orientation. In the case of the instrument Categorization, the emphasis is on dividing things into categories: which group does something belong to, how is something to be categorized, what are the characteristics, on what basis can the classification be made? In this way the different areas of thinking are trained systematically, with the intention that the students spontaneously adapt to this thinking process.
A lesson begins with the goal: what are we doing today, what will we achieve? When working on a lesson, one always analyzes what is being done, why it is being done, what one is trying to accomplish, whether it can be done differently. The method forces the student to think. The student is not prompted; he must achieve everything by himself if possible. The supervisor (mediator) may help find the solution.
How did I work with Peetjie? Together we looked over how far we had come so far, what we had done. What are we going to do today? How are you going to go about it? Why are you doing it this way? Why is that the best way? Have you already experienced something like this, something that you must do systematically? Yes, when you have lost something and you look for it. When you go to school and you pack your bag.
Why do you do that systematically? Then it takes less time. You don't forget anything; you know for sure whether you have everything. Do you also have to work systematically at school? Yes, doing addition.
Transferring learning to daily life, bridging, is very important. Peetjie was still young, not yet ten, when we started the lessons. By always bridging to her own world of experience, she could understand much more. For example, take the instrument Comparisons: Do you do that too? Yes, by copying, by sorting postage stamps, by looking for matching socks. Is comparing always the same? No, sometimes you must look at things piece by piece, such as in the case of postage stamps; not so with socks. When it was necessary, I got additional materials; for example, I let her sort.
She had to keep her attention on her work all the time—concentrate on her lessons without losing her focus. They are very intensive. When her attention waned, or her mind wandered, we had to get her to concentrate again using a question or a remark.
A typical lesson lasted three quarters of an hour to an hour. In the case of Peetjie, half an hour was the maximum. Frequently I had to start simply. In the case of the instrument Organization of Dots, for example, I had to first teach her the terms horizontal, vertical, square, rectangle, parallel. Feuerstein advised that the correct terms be used, e.g., not "upright," but "vertical." If she's going to learn something, then teach her the correct terminology from the start.
Let the child learn gradually. Try to let the child think of the solution himself, but provide help as a mediator. Ask helping questions; help analyze the problem when the child cannot do it alone. Don't prompt the child; when necessary, help him find an answer. Intervene when there is an error, when there is an incorrect solution, or when the child gives up.
Don't do this only during the lesson, but also in daily life. My children asked: "Why do we have two chimneys on our house?" Previously I would have given the usual answer. Not now. "What is a chimney for? Where does the smoke come from? How can one make smoke? When does smoke appear?" and so on. This way it takes a lot longer to answer a question, but the child finds the answer by himself while thinking and helping himself. The answer sticks with him much longer.
The children learn to think about a problem, to analyze, to build up from the elements. The goal is to get them to the point that they automatically apply this. It is important to deal with the child more consciously. We were at a shop and Peetjie got some sweets. She immediately put the wrapper in my hand. "No Peetjie, look for something you can do with it by yourself." I also asked her such things as: "Peetjie, look for your shoes systematically. Can you tell me how to drive to the sports complex? Can you help me sort the laundry?"
There is no easy way and there are no short cuts. What's important is to deliberately deal with the child, challenge the child, and exploit situations to the maximum. This doesn't mean that you must be busy with the child every hour of the day. But when you do work with the child, work consciously and in a correct way.
Peetjie got very tired of the lessons. Once when I called her to do her lessons, she said, "Feuerstein's lessons?"
"No, not the lessons of Feuerstein!"
"I am getting so tired of thinking," and she brought her hand up to her head. She probably hardly did any thinking on her own before this time. It really makes sense. Peetjie had not learned to crawl, run, talk, or draw by herself and thus had not learned to think by herself. That too must be stimulated in her. It doesn't occur spontaneously.
Much later it occurred to us that before we worked with Feuerstein's method, she had never combined anything, never made any connections. For example, if she came into a decorated room, she noticed it, but drew no conclusions. Only when we asked: "Peetjie, what do you see in this room?" did she say: "Streamers, balloons."
"Why do you think they are hanging here; what's going on?"
She also never asked why something was like it was, or why we did something. She couldn't place anything in time, even though she knew how to tell time. In addition, she couldn't distinguish between important and secondary matters.
The first changes were noticeable after working with her for a month. Wil was building a rabbit hutch when Peetjie suddenly said: "Papa, you're a carpenter."
We were in a shopping center in Eindhoven and Peetjie remarked: "Look at the funny high poles." She had never remarked about anything like that before. The fact was that she saw seemingly functionless poles standing there and that they were very high! Peetjie who noticed something, who asked something, who said things spontaneously!
At this point she also made her first spontaneous drawing. Up until then, Peetjie had drawn only things that we had taught her to draw. If you asked her to draw something else, she was unable to do so. Our children held a rummage sale with two girlfriends at the curb of the street. The proceeds were for the World Wildlife Fund. They wanted to make things themselves to sell and draw pictures with animals on them. Peetjie drew a house, the sun, clouds, and a car. She had learned that. "Peetjie, you should learn to draw animals." "Yes, I will." She drew a trailer behind a car. "What's that?" "Horse in there." After this she drew a meadow with a cow in it. So many changes within a month; that couldn't be a coincidence.
After the vacation was over, we noticed that school went easier. One had to repeat things less often. Her comprehension was better. That may also be due to the fact that I taught her lessons differently, no matter how difficult it was for me. I tried to teach the regular lessons at the same time as Feuerstein's method. When we had a new type of addition, I did not explain it, but tried to get her to find the solution herself, if necessary with the help of questions. If that was not successful, then I did an addition which was like it, but less difficult. This was followed by more difficult problems until she was able to solve the original problem. It was certainly not the fastest way, but in the long run it was the most effective one. In the meantime, Peetjie was in group 4 and still understood all the math problems of her class. She could solve new problems faster with little help. We often tend to prompt children who think more slowly, before they have had a chance to think for themselves. We still practice this method with math, where the child is not always conscious of his calculations. We also used this method with her for spelling. "Peetjie, this word is wrong. What is wrong and why? Which other words are wrong, and which are not?"
We noticed that this method worked at school when they started spelling verbs. Peetjie did that as fast as the other children in her class. But this did not always work in the case of math. To prompt a new problem and then to have the child copy a number of comparable ones is much faster and less difficult than helping the child to find the answer himself. However, in due time I saw the advantages. By allowing Peetjie to work on the new material by herself, I saw where the problem was, what was less well understood, where mistakes would continue to be made. Time is used more selectively. We discovered that if Peetjie made frequent mistakes and didn't understand something, it was because either she did not read the instructions carefully, did not fully understand the terms, or had lost track of the story.
We also worked on additional memory training. She had to repeat meaningless words. First three, then four; finally eight. Her memory for words was remarkably poor and it required extra training. We had already noticed that Peetjie could not remember certain words, such as the word "penny." When she was asked to say penny she would say: "That difficult word, not penny, not dime, not quarter." Now we are teaching her to use a study aid or to write the word down.
During vacation we worked on IE every day; less frequently when she went back to school. After we had been doing this for a while, we challenged her to reflect. A review is an essential part of the lesson. What did we do? How did it go? What did we learn? What went wrong and why? In the beginning this was impossible. She could talk about the reading material offered to her but could not tell why certain processes had taken place. At the time, she never talked about herself, what she felt, why she reacted the way she did. We challenged her. Why did you do it wrong the first time and later correctly? Why did you find it difficult? What can we do so that it will go better the next time?
First we had to teach her to talk about her feelings. What does happy, sad, and afraid mean? She lacked the words to express her feelings. It was a relief when she learned to talk about herself and could tell what she liked and what not, why she was afraid, what she thought was cool and why. Before that we used our intuition and her facial expressions. We realized later that she had not told us much.
Once school began again, we were extremely enthusiastic about Feuerstein's method. It was a success with Peetjie. We worked on two instruments. Organization of Dots and Orientation in Space, and she could do both. During that month we saw so much progress that we gained faith in the method. Peetjie had changed. She talked more, she took notice of things. Before this time, she never took any initiative herself, never noticed anything, never asked questions, never participated in a conversation unless we asked her questions. Naturally she got all of our attention, and we worked with her intensively. There was so much progress in so short a time; it could only be due to this other teaching method.
We told her school what Feuerstein's reaction was, what we did with her, how we worked with her, what the method consisted of. They showed an interest in Peetjie, but not in the method. Nevertheless, we were convinced of the fact that this method could result in an enormous enrichment for other children in such a school. All children with learning difficulties—who think chaotically, who do not ask questions—should be able to participate in a cognitive training program. A great deal of energy is now lost because children cannot assimilate well what is offered to them.
We were convinced that Peetjie could not have come anywhere near this far without Feuerstein's method. Perhaps that is why the school thought she had maxed out, that we could expect to make little progress with her.
At the time she was approaching many subjects at the boundary between concrete and abstract thinking. In the case of mathematics, we began with story problems: in the case of language, with sentence structure. Before this time, we were busy with adding and subtracting numbers under one hundred. A great deal of manipulative were used at the MLK, such as math blocks, which meant that addition had remained concrete.
With division and multiplication above a hundred, manipulatives could no longer be used. In the case of language, vocabulary and technical reading went better than verb conjugation and comprehension. At that time it had always been said that she would never be able to do that. Before I started the enrichment program, she never freed herself of concrete images. In the case of math, I always used examples from her world of experience, and I also used a great deal of materials. Mathematics then becomes a matter of following instructions that have been learned well. When I practiced math problems with her. she could do them by herself, but the problems could not deviate much from the example.
Technically, simply reading is much easier than answering questions concerning the text. This requires insight into the figurative language, finding the background of the text. Only if the answer could literally be found in the text was she able to answer the question. If Peetjie could not think, we could not help her any further.
Peetjie began to talk more and to defend herself, and when there was a quarrel, she was no longer automatically blamed. Because Peetjie had never attended a school in our neighborhood, the children did not know her, with the exception of Werny's friends. They knew what she was like and got along well with her. Joining them in games was difficult because Peetjie came home later and then had to join in during the middle of a game.
At the MLK she got along with everybody, but she didn't have any real friends. She could never play with them even for a little while; they lived much too far away. That bothered Peetjie a great deal.
I had read about a blind child who attended a regular school once a week in order to become more integrated in his own neighborhood. That was one solution. We did not agree with Feuerstein's suggestion to send her to the elementary school. The classes were too large, too difficult; she might not be able to keep up and join in, and we surely didn't want that. I suggested the following to the MLK: one out of every fourteen days at the elementary school. They thought this could not be done.
Then we asked the director of the elementary school what he thought—whether he would agree to this if the MLK agreed. He asked how she was getting along, what she had learned in different subjects, how she was, what I wanted. He was not against our idea. We wanted to let Peetjie participate in Werny's class, group 5. But he advised group 4; there she could certainly cope with all class content.
Again the question was posed to the MLK. One Wednesday morning per month was agreed on. We began in the middle of November. It was a very, very tense time. How would Peetjie behave? How would the group react? Werny stood behind them: "Then at least the children will know who Peetjie is." At twelve o'clock I went to pick her up, shaking. "Hello! It went extremely well. She was able to keep up with everything in the class; she can do a great deal. In math, she is further along than my other children." The teacher had prepared his class well. He had told them about Peetjie and all the children had written her a letter. "Is she going to come for sure next Wednesday? Otherwise the time in between will be too long." The following Wednesday mornings also went well. She fit in the class well.
Peetjie noticed that the children at the elementary school wrote in cursive while she printed. "Mama, I write in cursive. Please, show me." She connected her printed letters.
"That isn't right, Peetjie. You must use other letters. Should I teach you?" It was almost Christmas. When the first Christmas cards were written, she could write "Peetjie" very neatly in cursive. On the last few cards, she also wrote "Merry Christmas" and "Happy New Year."
Because it was going so well at the elementary school, we began to think: Could Feuerstein be right? Is a regular elementary school indeed better for her? Peetjie was imitating the MLK behavior more and more—wild and rough. She also began to use language with which we were not very happy. She had difficulty at her clubs. She took part in swimming, gymnastics, and scouting. We stayed there as much as possible or gave clear instructions before we allowed her to go. If an activity was going to last a long time, such as staying overnight with scouts, then things went wrong.
There were few problems at home. We were always nearby and prevented wild or inappropriate behavior by taking immediate action. Peetjie could not control herself when she was wild. Play wild, fight wild; she didn't notice when the others stopped being wild.
Peetjie had three more days of Christmas vacation, during which she went to the elementary school. She kept up. After weighing the pros and cons, we asked the elementary school to accept her. Several other children at the school were getting extra help at home or through private lessons. We carefully asked what the situation was after a few weeks. Still no decision; they wanted to think it over carefully and talk it over with the entire teaching team. It kept us in suspense.
In the meantime we were invited to a taping of a TV program with Peetjie. I took the opportunity to tell them about Feuerstein's method. Peetjie did quite well. She was spontaneous, reacted well, and looked lovely. We received only positive reactions afterward. "She can do a great deal; I'm glad that I saw your child; now I have the courage to carry on with my child." People also asked questions about the method.
Frequently subjects like this are treated much too lightly, such as: Where can I order this method? During such a broadcast there isn't enough time to make clear how much training is necessary in order to work with the instruments. Fortunately, the StiBCO5 was busy setting up the first Instrumental Enrichment program in the Netherlands.
We were invited to speak at the elementary school on the Tuesday before Easter. We made a list of things that, according to us, the school should do if they wanted Peetjie's transfer to succeed. For instance, she had to be in a class where she was able to keep up with most subjects and receive extra lessons in order to get help with some things. She must be promoted only when it was to her advantage, otherwise she must repeat the class.
The school had the same starting conditions. However, they were of the opinion that the other parents did not need to be informed beforehand. This wasn't done when they accepted other children, such as children from a socially weak environment. The discussion went quite positively.
"When do you want to start?"
"As soon as possible. In July she has to be operated on, and it would be good if she is used to it here beforehand. Otherwise it will be too much for her: a long vacation, the operation, and then a strange school."
"Good, then after Easter vacation."
We were perplexed. That meant three more days at the MLK, then Easter vacation, and then the elementary school! The conversation ended and we went home, cheerful, relieved, full of questions, and afraid of the future.
Would she be able to do it? Thirty-three children in the class, lessons with the whole class instead of in a group of six. The regular playground. We weighed the alternatives, thought it over, and alternately said yes and no. I got in touch with the MLK: "I wouldn't do that. It's going well here now. She cannot manage it. The classes are too large. The material is covered much too rapidly, they use too few manipulatives. She will always remain in a concrete world."
Back to the elementary school. They were of a different opinion. "Why shouldn't you do it? What can the MLK teach her that we cannot? Cognitively speaking? We believe that she will acquire as much knowledge here. She will be surrounded by children who can do more; that will challenge her. Don't forget that we have other students who are learning impaired. We also help them to keep up. Socially speaking? She will be more at home here; in her own neighborhood, at the school her sister and the other children of the neighborhood go to." We made our final decision on the basis of the social aspect. That was much better at the elementary school. We accepted that although she would progress less cognitively, she would function better socially. Peetjie was withdrawn from the MLK and went to the elementary school after Easter vacation.
Peetjie was placed in group 4, the same group that she had attended on Wednesday mornings. She fit in the group when it came to knowledge. She was ten years old, two years older than most of the children, but because she was so small it was not noticeable. This was a good group for her from a social standpoint. The class and the teacher were used to her due to her attendance on Wednesdays, so she did not have to start as a total stranger.
The first school days went well. Peetjie was sweet, but somewhat wild. The first incident occurred after a few days. Peetjie tore another child's drawing into pieces. Reason? Unknown. We got such a confused story that I decided to let it go.
Learning went well. We did not yet encourage her to play at other children's homes. We were afraid that something would go wrong, and that people would get the wrong impression of Peetjie. Werny was one grade higher. Initially her class let Peetjie play along. We knew nothing about this until I heard Werny say to Peetjie: "From now on you must play with your own class. You have been with us long enough." The two children now got along with each other even better. Now that Peetjie was also at the elementary school, they played the same games, sang the same songs; they had P.E. on the same day, knew the same children, and talked with each other about what had happened at school.
Peetjie was always very eager to go to school. It pleased her to go with Werny. Peetjie had always said: "I want to go to Werny's school."
"You can't do that, Peetjie."
"You know that you have DS. That's why it's harder for you to learn. They teach in small groups at the MLK, that makes it easier for you to learn. The classes are much bigger at the elementary school. That makes it harder for you to understand things, to learn math, and how to write."
She just couldn't believe that she was finally allowed to go. She had already been going to the new school for two weeks when the teacher told us: "Do you know that Peetjie still asks whether she can come back tomorrow? Does she like to come?"
"She is very happy about it, but she still can't believe that she is allowed to. She used to ask about it all the time and we always explained that it was impossible. Do you find it strange that she still cannot believe it? I don't find that so strange."
"Yes, I never looked at it like that."
She was often too wild on the playground. After this we told the principal that Peetjie should have extra supervision. Peetjie could not stop when the playing got rough, even when the others wanted to quit. Once the other children caught on, it became a game to make Peetjie wild: "Peetjie, come help me. That boy wants to attack me!" Peetjie took the bait, joined in the fight, and could not stop.
Unexpectedly, Peetjie brought her math book home and asked if she could rework the math problems. I was in a state of panic since this had never been necessary before. Problems she had not yet had at the previous school were given extra attention and time. In addition, at the elementary school they used a different method to calculate than at the MLK. Peetjie needed considerable time to adapt.
Her cursive writing began to improve. It was very important for her to be able to do that; she therefore had no problems with doing extra exercises.
She was just as far along as the other children in her group in reading. The teacher said: "I graded her fairly, like I did the other children. She is not the worst one in the class and of course she will pass."
There was another annoying incident during this period. Peetjie choked on a piece of meat. The house doctor directed her to the emergency room of the hospital. The ear, nose, and throat specialist refused to look at her unless she was fully anesthetized—only because of the fact that she had Down Syndrome. Repeated attempts from us and the emergency personnel did not help. He was firm: "I treat these children only if they are under an anesthetic." He would not see her until this was done. Fortunately Peetjie suffered no harmful consequences. It was the umpteenth time that she was discriminated against because of her condition.
During summer vacation we returned to Israel for the second half of the course, and for Peetjie's operation. We had written to Dr. Wexler. He helped her the week before the course started. Once there, he discussed with us exactly what would happen. We should count on two days in the hospital.
We told only Peetjie's teachers about the operation. In the Netherlands, operating on a child with DS is taboo. Following a talk Feuerstein gave on TV once, there was a big storm of protest: "When you operate, you do not accept your child. You want to hide the handicap; the child will not improve; there is no proof that he will be able to talk better. The operation may be a failure. The tongue is not too long but too flaccid. The tongue is not absolutely but relatively too long. It is too painful. There are other methods, such as a mouth plate."
We had deliberately chosen to have her operated on in Israel. They had more experience there, but we also preferred for her not to be in Holland after the operation. We could do without pity. We even decided to stay in Israel an extra week after the course. We booked the return flight for that week. We hoped Peetjie could manage that.
We brought some extra things with, such as an immersion heater so we could heat up water, powdered milk, cereal, and a small mixer. The first few days we would be able fix her meals in the hotel room, should that be necessary. To keep her busy, we had brought a Walkman with new tapes and a hand-held puzzle.
We told her as much as possible about the operation and the anesthesia, and also that she would experience pain. She wanted to get rid of her large tongue. "It is not good; I would like to be able to hold it in all the time. We are going to Israel and then they are going to take a large part of my tongue away. Then I will have a nice tongue like Werny," she said to her teacher.
We left on Saturday. On Monday we went to Feuerstein's Institute. He was very pleased with Peetjie and especially about the fact that she was going to an elementary school. Peetjie was tested and questioned again, especially concerning her self-esteem. "Do you feel that the teacher calls on you as much as on the other children in the class? Do you have friends? Do they want to play with you?" And also, "How do you feel about how you look."
"And your face?"
"Yes, it is cool as it is, the hair; but the tongue, the tongue is too long. But soon my tongue will be short, a nice one like Werny has." She certainly was concerned with herself and had a rather good self-image. She also related that the MLK was not so cool, not such cool children, just one friend, but the elementary school was cool. She liked to play there. They took photographs and made tapes.
On Tuesday we went to see Professor Wexler. The tongue would be shortened by removing a wedge-shaped piece; some fatty tissue under the chin was also to be removed.
She was supposed to arrive at the hospital with an empty stomach on Wednesday morning. Peetjie was afraid, but not panicked. First we had to wait in the ward, after that in the preparation room before the operating room. She was given a shot. I kept on talking to her—about her birthday, about her presents, about whatever occurred to me. When she was called into the operating room, she went into a panic. She got a shot and dozed off. After an hour they came and told us that everything had gone well. After two hours I was able to go into the recovery room to see her. Peetjie lay on a bed on her stomach, still anesthetized. She had an IV.
"She should wake up now," a doctor came and told us. They poked and prodded her; she came to and did not doze off again. She wanted to lay on her back, but was not allowed to. I noticed that she was in pain; she was given a shot, quieted down, and had no more pain. Professor Wexler came to take a look and told us that everything went well. She was brought to the ward. First she was passive, then she reacted well; she had no pain. I wanted to stay with her. She used gestures to communicate with me, for example, that she had to go to the bathroom.
She was supposed to drink that night, but she did not want to. It looked like she was getting nauseous. In the morning I tried again. "Peetjie, take some water in your mouth and then spit the water out. You don't have to swallow it." She did that. She swallowed automatically. At the Institute they strongly advised us to get her to drink. "Once she drinks well, she can leave the hospital." Then she had to drink a sip—she did it under protest, but was successful. After a couple of times came two sips. When Professor Wexler arrived, she was sitting up in bed playing with her toys, and said: "Good morning." The first words after the operation! He was surprised that it was going so well.
"If she keeps doing this well, she can go home in the evening."
"No. Hotel," said Peetjie.
Around twelve he came again and we were able to take her home; twenty-four hours after the operation. She had already eaten a hamburger patty with cold, mashed potatoes. She did not eat much, but then it wasn't very good.
Before we left we had to take care of the bill. Wil and Werny went to another floor. Peetjie had to go to the bathroom and we looked for one. "Peetjie, go by yourself, and I will stand in the hall, otherwise papa will not be able to find us." All of a sudden Peetjie stood next to me and tugged on my skirt. "Mama, my tongue is short." Full, superfull of enthusiasm. "Yes, great Peetjie! But you know that." All at once I realized that Peetjie had not yet seen herself. There were no mirrors in the rooms. She must have looked in a mirror in the washroom. She was so pleased. "My tongue is short. I am not Mongoloid. I am Down Syndrome. Now my tongue is nice like Werny's."
We went back to the hotel. After she had rested for a while, she sat in front of the mirror looking at herself. That's all she did, sat in front of the mirror, said nothing and heard nothing; she just looked. She opened her mouth and looked.
In the evening we took her to a restaurant. She ate soup and mashed potatoes. Friday evening after dinner the head waiter brought a cake with "Good Luck" written on it. A gift from the hotel. As the days went by, she came with me to the pool, but she stayed in the shade and did not put her head in the water. After only two days she was eating crusty bread; she really likes that.
On Sunday we saw Professor Wexler for a check-up. Everything was fine; we did not have to come back. She must still be very careful when eating. No more crusts! We took our packed lunches of cold chicken to Jerusalem and ate in a park. We gave Peetjie a piece of chicken; it tasted so good that all of a sudden she grabbed an entire leg and began to chew on it. She ate two of them in a row.
On Monday, festivities were held in connection with the beginning of the course. Peetjie and Werny gave a gymnastics demonstration as if nothing had happened. She had no trouble at all and our trip through Israel after the course was an adventure.
We got a lot of advice from Professor Feuerstein about how to proceed with her—speech correction, memory exercises, continue with IE, and work on her feeling of self-esteem. Let her do it all herself. Give her a broad cognitive education, but also stimulating social activities. Back in the Netherlands she was completely herself again. "Only a piece of my tongue is in Israel," as Peetjie herself once said. She was glad that she had been operated on. She did not talk about it spontaneously, but only when someone asked her about it. When the parents of a child with DS visited us, we asked her if we could talk about her tongue operation.
"Good, then we won't."
Once the people had been with us for a while, she said. "Mama, you have to tell."
"About the tongue operation."
"You can do that yourself."
"Ma'am, you must have the baby's tongue operated on. It's not good to have such a big tongue. You can't talk. And he must also learn, so learn from Feuerstein." She backed the operation 100 percent. She did not like the pain, but she said: "Yes, I had some pain, but children have to have their tongue operated on. You cannot eat well with a large tongue. Your mouth is so full. That is not good in the mouth. Now with a short tongue it feels better. I can also talk better. You cannot talk well with a large tongue; then, then I lisp. My tongue no longer sticks out of my mouth. Having a large tongue is not good."
Everyone's reaction was positive. Even fervent opponents reacted differently when they heard how it went, how Peetjie reacted. In addition, they quickly saw the advantages. She no longer stuck her tongue out, her mouth was open less often, and after a month her speech began to improve. I had to train her intensively for that. She was accustomed to holding the tip of her tongue down and now she had to learn to bring the tip of the tongue upward. Mouth exercises, sounds, and letter exercises. In the beginning, her tongue was swollen from the operation. When the swelling went down, things went better. In Israel, we had started speech therapy. We continued that intensively at home. Several times a day; also during vacations. These exercises were not much fun! But in no time she was saying letter combinations, such as st, ts, tst, rts, that she had never been able to before the operation. Her spelling also improved. Previously she reversed letters, for example, krek instead of kerk. Once she pronounced the words well, she also wrote them well.
Due to the fact that her tongue no longer stuck out, she looked better. In addition, her feeling of self-esteem grew immensely. She no longer felt "Mongoloid." She knew that her tongue no longer stuck out and she felt more like the people she idolized. We regretted that we had not had her operated on sooner. In the meantime, her jaw completely aligned without a brace. Her upper and lower jaw meshed well and her teeth lined up. The orthodontist who saw her regularly was amazed with the good result without having to intervene.
Her voice went up an octave. She sang in a choir and her voice was no different from those of the other children. She was more comfortable and quicker because her oral cavity was not filled with a large tongue.
Peetjie started group 5. I told the new teacher about Peetjie and we discussed whether I should come regularly to hear how it was going. It was certainly not going bad at all. Now and then she had trouble with math. I worked on that with her at home. That year they started using reference words with reading for understanding. After she took a test, the teacher called me to tell me that Peetjie had done well. She did not have the lowest score in the class by far. Fine, but they had expected her to score lower than the others. The pattern of expectation they had with regard to Peetjie was low.
I was always very "jumpy" with things relating to Peetjie. When I heard that something was not going well, I went into a panic, I could not sleep, and was constantly occupied with it. That resulted from the MLK period and lasted for a long time. The elementary school always assured me: "You are taking nothing away from her, not even when it doesn't go well. Then we adapt to her tempo. Besides, she can repeat a class."
We had always noticed right away that she reacted strangely when we talked about things that were in the distance, for example, about the construction of a house, about rocks and mountains. We wondered whether this was due to her eyes, and we asked an optometrist: "What does she actually see with her glasses?"
"What do you mean?"
"Does she see what we see?"
"No, not that: quite a bit less."
"Can she see a church steeple?"
"No, she can't see that."
"Can she see a squirrel that's sixty feet away?"
"Yes, she sees something, probably a brown spot."
"What does she see well and what not so well?"
"But what did they say in Grave?"
Were we ever referred there? We should go there.
When Peetjie's eyes were examined in Grave, it seemed that she saw less than we thought with the aid of glasses she saw between twenty and thirty percent. She saw the blackboard unsatisfactorily, and if a text was not printed large enough she made unnecessary errors. She had no depth perception and had cataracts on both eyes. The optometrist we were dealing with knew that, but had never bothered to tell us. Why not? "I feel miserable and guilty," I said.
"Why? You don't need to feel guilty."
"No? And what about the missed chances? But we told him about all the things that she did not see completely, about animals and rocks and buildings. We though: she was sitting there in a daze. The problems at the school that were not necessary."
From then on she got school supervision for her poor eyesight.
Once we knew how poorly she saw, we figured out how to deal with it. We used more illustrations, always controlled what she did and did not see. We then taught her how to behave in traffic, how far away an automobile is, when she should and should not cross the street. If you have no depth perception, estimating distances is very difficult.
We were still looking for a solution for her glasses always slipping down. After a lot of questions and phone calls, we got an orthopedic office to make a nose piece that was glued under her glasses. From then on her glasses sat in the middle in front of her eyes. Because her eyes were slanted, this was especially important for her. As soon as her glasses fit well she was able to read the signs along the highways!
When we made video recordings for a symposium, we saw that she was a real part of the class. Mathematics, writing, spelling: Peetjie was able to keep up. Even while playing during recess she was one of the class. We were pleasantly surprised at how she did, how she was treated. At the symposium in Sittard, called "Integration of Children with Down Syndrome," we showed videos of Peetjie, and I talked about how we dealt with her, our motivation for doing it this way. We got only positive reactions.
Her teacher also talked about their motivation to enroll Peetjie in an elementary school and to help her to keep up in class. Peetjie was also there. She was not supposed to go to the auditorium at the time of the lecture. But she went with the teachers from the elementary school! During my story about her, she listened with a triumphant face. She behaved very well, demonstrating how good she was. Naturally Werny was also there. She thought that she and Peetjie should wear matching clothes so that people could see they were sisters. Fortunately, Werny is not ashamed of her; she is very proud of her sister, who is doing so well.
In spite of this, we were happy when the end of the school year approached, and curious about how she would be doing. She passed again. "We should not hold her back. She has a right to be proud of her performance." All that because we were sure that she would have to repeat group 5.
I immediately contacted the teacher of the next class. It was to be a class of thirty-six students and Peetjie was not the only child who required extra attention.
"You know that I work with her at home. Actually, I am eager to receive materials on a number of subjects so that I can work with her in advance, especially during vacation. Furthermore, as soon as you start, I will take over if there is a problem. I work alone with her and can tell much sooner where mistakes will occur. I sit next to her while she works, hear her thinking so to speak, and note where the mistakes are. And she will make mistakes that are different from those of the other children. Our concern is that she learns; it makes no difference who she learns from."
A few days later her teacher got back to me. "You are right. We'll let you work with her alone in order to get her as far as possible. You are right that it doesn't matter who teaches her. No competition. You can get all the materials."
Yet mistakes were also made in his class. We again related what Peetjie could do and could not do, how she was. She operates on two levels—one level at which she thinks, calculates, and reasons, and one level at which she is passive, does not think, does not combine. I see it in her, in her eyes, in her posture, and I hear it in what she says: "Eh, eh ..." in a long, flat tone. When she is thinking well, she reacts with: "Eh, that is ..." I hear it in her voice when she knows what she's doing.
During the first week we got little feedback. It went well, due to the fact that I helped Peetjie in advance during vacation. I was very busy at work, and therefore went to school less frequently. From the start we warned the teacher that Peetjie could fool people. Not intentionally, but Peetjie did what people expected. If you do not expect enough, if you demanded too little, then you got nothing out of her. The teacher made a home visit. At home things went well; math was OK. At school things did not go well at all. Math went poorly, so poorly that thought was given to a separate math program for her because she could no longer keep up with the regular program. I didn't understand it. "Is math going so badly? Not at home. Here it's going well. Why is it going so poorly at school?" He gave the example of addition problems that she did not understand at all. I got out her math notebook. "She did these problems at home alone yesterday."
"I see by her handwriting that Peetjie did these, but at school she does them all wrong."
"Then I'm afraid that you're expecting too little of her. Peetjie performs well only if you expect it of her."
On the following day he had her do her addition problems. They were all wrong. He called her aside. "Peetjie, now you must listen. You know how to do these problems. Do them again. If you don't know them, you must go back to the previous class." Peetjie did the problems again, went back to him, caressed his arm, and said: "Take it easy, they're all OK now." And so they were.
Her Christmas report card was disappointing. The results of the class tests were very mediocre; there was serious doubt about whether she could keep up. Due to pressures at work, I frequently came home late. Peetjie probably missed me terribly. I had also been working less with her. The months of November and December were always a difficult period for her—a camp during fall vacation from which she came back completely exhausted, Werny's birthday, my birthday, Santa Claus, a long trimester. I talked the report over with the teacher. Not very encouraging. "May I see the test results? Then I can decide what we need to do during Christmas vacation." I received everything I needed. We talked it over with Peetjie at home.
"You must listen. Your report card is not very good. If it keeps going like this, you will be held back a year. That isn't bad, children are frequently held back," and we cited examples of children from her previous class who had been held back.
"No, I don't want to. I want to remain with my friends." "But you can't do that with a report card like this." "I want to stay with my friends, not be held back a year." "I will try to make it work, but during this vacation we must work hard. We don't know whether we'll succeed, but I want us to try hard." Peetjie thought it over, sighed, and said: "Let's start now with math, then we will do grammar, and then spelling." At the end of vacation I let her retake the tests. I might as well have had another child! After vacation, at school: "Look at how she scores now. She has caught up completely in math and spelling."
At the end of January, when I was at school to see a play she was in, the teacher said: "Things are going well. I am really surprised by what she can do." In less than a month!
At school they noted a difference between her high and her low functioning level. That gave us quite a bit of peace of mind. As soon as that was recognized, we knew that there was no reason to panic if she did poor work once in a while. It was not because she was incapable, or because the material was beyond her level or too abstract. No, at that moment she was not functioning correctly. Most of the time, I am successful at getting her out of it; this was more difficult when she was at school. The school made an evaluation report for the inspector concerning Peetjie's functioning, in connection with a request for extra tutoring. She kept up with everything in her class. She was passed again.
Math, spelling, reading, and writing were all up to par. You could see her improvement with each report card during the year, sometimes by a half, sometimes by a whole point. Getting used to the class, getting used to the teacher, the teacher getting used to her were especially important.
At home we helped her with school subjects she was having trouble with, especially math. I was used to giving the lessons on the basis of the supporting teachings, to let her discover everything herself as much as possible.
We also went through the IE lessons. I spread them out. I worked with her in the morning before she went to school. Peetjie is a slow starter. If she had already worked at home, it went better at school. She rode her bike to school. During the first half hour there was a general discussion. Due to this she had sufficient time to rest so as to be able to concentrate again. After school she had enough time to play and to take part in sports. Then I worked with her again: catching up on school subjects, IE, or speech correction exercises. She did not get any homework, and school was out at half past two. One of the advantages of elementary school was that she had an hour and a half more time at home than when she went to the MLK school.
We had to work much harder at home with Peetjie than is necessary with most children. In the first place we had no help, either at home or at the school. Due to that we had to think of everything ourselves. We did a lot wrong, which we discovered whenever things did not go well. A great deal of time was lost because of this. A remedial teacher who specializes in DS, or at least in cognitive slow learners, would have made a great difference. Now we had to correct a great deal after the fact. It is much better to be able to anticipate difficulties that are coming up.
We did that with math. We did the math problems at home, before they were covered in class. That worked well. Peetjie was familiar with them, the problems were repeated in school, and she was able to perform with the rest of the class. She knew her material and performed like the other children, which was in turn very stimulating for her. The teacher was also glad she could keep up; it made it much more pleasant for the entire class.
In addition, Peetjie has other handicaps: she hears poorly, she has a thyroid abnormality, she sees very poorly. All were discovered way too late and this resulted in much lost time. As of now she still needs extra time due to her poor vision. When we found out how poorly she saw (she was twelve years old), we used auxiliary means, such as enlarging the materials, a lamp, slanted reading desks, notebooks with thick lines, television glasses. We should have done that much sooner.
Naturally we don't know if Peetjie would have scored higher if she had been helped better. We know, however, that it would have been less trouble for her and for us, and that fewer lessons at home would have been necessary. Fortunately the lessons never negatively affected the relationship between Peetjie and me. I am rather strict with her, especially during the lessons. Peetjie gets mad at me and expresses it very spontaneously and frequently. We will not stop this sort of spontaneity. We have taught her how to handle it.
When she rightfully passed to group 7, we thought again: This is the last year she will pass. What she has achieved is incredible: over to group 5, then to group 6, and now to 7.
Wil said: "This time why don't we assume that she will do well? Each year we think she'll have to repeat the class. You know what Feuerstein says: 'You have to believe.'"
The first week after vacation I made an appointment with the new teacher to talk about Peetjie.
"Is that necessary? We wanted to treat her like the other children." I told her that that was impossible. Because of her eyes, her ears, but also because of her DS, she had to be treated differently. But you can still require the same of her. We also said:
"She has now passed three years in a row. She will be successful again this year." At home I again worked with her on math and reading comprehension, so that no extra time needed to be spent on her at school.
She always made it clear what she wanted and took the initiative herself. She signed up to be an acolyte and saw to it that she took part in the school choir. Now she came home with the news that she had registered for trampoline jumping. Werny did all these things too, so it was difficult for us to deny her.
She had played the recorder since she was seven years old. First I gave her lessons, then she went to a private teacher, and after that she had group lessons. In the meantime, Werny went on to music school and played the German flute. And again Peetjie wanted to do what her sister did. She chose the clarinet and we were successful in placing her in the music school. After three months she was able to take part in a concert. After a year and a half she got her first degree and she played in an ensemble. It's important to play a wind instrument. It helps her exercise her mouth, tongue, and lip muscles, and trains the lungs and respiration.
A few weeks after fall vacation she had an relapse. It was pressure, pure and simple—a gymnastics and a swimming camp in rapid succession, and we were away due to a symposium. Because we believed that that year she would pass again and accomplish much, we were disappointed. We once again discussed with Peetjie what she wanted. "To pass and stay with her class." And that helped. After Christmas it went much better and a few weeks later she was content again. I heard that she was not behind the group in most subjects. She passed again, to group 8, and was able to finish elementary school.
That meant completely different possibilities for follow-up instruction. We looked at all the schools in the neighborhood; we did not want too large a school; we wanted a school to which she could ride her bike and where she could get lots of help. What were the possibilities? No VSO MLK6 or VSO LOM7. Individual vocational instruction was one possibility, but probably there would be many students with the same behavior problems as at the MLK, and for that reason we did not consider it. A standard VBO-school8? That was permissible when she finished elementary school. But would she be able to do it? We had few alternatives. We found a not too large VBO/MAVO8 school, which could be reached by bicycle. Moreover, the school had a mentor assistant for each student. We called and went to talk to them. It was more than a year in advance, but in view of all the problems that we anticipated with placement and obtaining extra tutoring, it seemed sensible to us. The director was not at all negative; he felt that she should have a chance. In November we went back for more meetings. The school request ed and received extra tutoring hours. These hours were intended for extra help from the mentor. Extra tutoring for a student with Down Syndrome had not previously been recognized in follow-up instruction.
Things went well at the elementary school. While according to predictions it was supposed to get worse each year, it actually went better each year. This year, for the first time, there were no problems in the beginning. But for the first time she had the same teachers two years in a row. This year they had a combination of group 7 and 8. We were afraid of a combination class, feared that she could not manage it because it is somewhat more out of control. During vacation we practiced talking in a hubbub.
The results were good. They required the same from her as from the others. She had to finish everything. Otherwise she must stay late and finish up. Also, if she did not finish her homework, she had to stay after school. That happened twice. Verb spelling went well. She can reason why a word must be written with a dt or a double d. Math went well. Fractions were no problem; addition, subtraction, multiplication, she just did it. Even story problems went better, since she was able to reason better.
She is now fourteen years old, and this past year we discovered that she has a thyroid problem, hyperthyroidism. She takes medication and reacts to it well. After a week and a half she was a completely different child—much more active, quick-witted, talkative, taking more initiative. In the case of math, I was astounded by her performance. It's too bad it lasted only a week, at which point she regressed again. Luckily adjusting her medicines helped. It's possible that Peetjie had produced too few thyroid hormones her entire life. That could explain her constipation, occasional regressions, slow periods. It's too bad that we didn't discover this earlier! She also gets hypoglycemia, among other things, with intensive training. This year we went back to Professor Feuerstein, and she was retested. They were amazed at her performance, especially in the case of math. She had earned follow-up instruction.
We don't know what the future will bring. How will it go at the next school? And after that? Will she be successful at getting a job, work where she feels accepted, where she can be herself, where she feels she belongs? Will she be able to build a life that suits her, in which she can be happy, in which she can determine what she wants? We tried to prepare her for the future as much as possible, just as we are doing with her sister. We also tried not to worry about her too much. Today it is going well; let's hope that it will also go well tomorrow.
Gradually we noticed that Peetjie was a different child. Why was she performing so much beyond expectations? Was it the way we treated her as a child—working with her contentiously, making demands of her, teaching her to listen? Then consequently giving lessons, but not asking more questions than she could answer. Step by step; when it was necessary, a step back. Peetjie always felt secure. And, moreover, she has a sister who is her idol. Peetjie always regarded Werny as an example. Werny is not that far ahead of her, she stays with her. You can see it in all the things she does, the same as Werny.
We always worked with the best intentions with Peetjie. We used the time we were with her as well as possible. A handicapped child requires more time and attention; so use your time optimally. Do not just take care of her, but teach her to take care of herself. Don't just keep her busy, but teach her to keep herself busy. In the case of Peetjie, that meant not only reading to her, but teaching her to read to herself. The extra time that it took we got back double and more. Now she can take care of herself, she can stay at home by herself, she can keep herself busy; she goes shopping, she goes to friends' houses, she straightens up her room, she cooks pancakes. She has the self-assurance that she can learn the things she wants to do; she proved that this past summer when she learned to wind surf simply because she wanted to. Going to Professor Feuerstein was the right thing to do. It was the first time we heard that we were doing well; that was inspiring. We learned to think through the lessons of the Instrumental Enrichment program. Before this she could do quite a lot, but without Feuerstein's program the transition from concrete to abstract would not have been successful. Moreover, we have treated her quite differently since then, and that may have made a great difference.
It is important for these children to be better monitored medically. In the case of Peetjie, we always had to take the initiative. Is it so strange that children with DS do not function well? There can be many problems. In the case of Peetjie it was hearing, seeing, infections, and thyroid problems. What would have become of, her if we had not looked after her? A ZMLK child, frequently sick, hard of hearing, with ill-fitting glasses, her tongue hanging out of her mouth, talking poorly, and running along with drooping shoulders. A child who could not do math and could only read a little. Dependent, not a member of the usual clubs, a child who did not feel at home in the ordinary world.
Peetjie's life has been recounted as faithfully as possible. Many details were left out. I had only a limited number of pages at my disposal. Assistant teachers and others who might recognize themselves, please understand that we don't mean to offend anyone. We understand that not everyone has the same concept of how to deal with children with Down Syndrome.
In the past there has been much misunderstanding about Down Syndrome and even now there are out-of-date views in instructional books. It will take time to get away from that. We hope that in the future children with Down Syndrome get more chances and possibilities.
With this story we want to hearten all parents and those who work with the handicapped. Our way was not always the easiest one; it was sometimes difficult and burdensome, but it was not in vain. It is hard to fully describe the success of my daughter, who has such a good self-image. It radiates from her each day. She enjoys her life, her school, her clubs, her friends. Each week, each day has so many wonderful things about which she can rejoice.