Ecological Influences in the Development of Brain-Impaired Children: A Multi-Dimensional Approach

Jo Lebeer – Associate Professor, University of Antwerp Medical School, Belgium and Coordinator of the Inclues Network for Inclusive & Cognitive Education
Roberta Garbo – Associate Professor of Special Needs, Bicocca University, Milan, Italy
The Ontogeny Of Cognitive Modifiability: Applied Aspects of Mediated Learning Experience and Instrumental Enrichment, A. Kozulin (Ed.) p. 239-58.
  Reprinted with the permission of Jo Lebeer, Ph.D.


It is an increasingly agreed upon fact that child development has to be understood in the context of its ecology. It is, however, less clear how ecological influences work: What is meant by such concepts as "social support" and "quality of interaction"? What does "concretely", "in daily life" mean? In this contribution an outline of an ecological approach in eliciting development and learning of very low-functioning children described. A short description of aspects of ecological research is given, followed by a rationale for choosing a qualitative method. Ecology is the study of the network of relationships of certain phenomena between many levels of existence. This is illustrated with a qualitative study and description of case studies of low-functioning children, starting from the question of why some of them develop to a much higher level than others, which can hardly be explained merely by inborn factors. The conclusion is that child development is the result of a complex inter-relationship between all relevant levels of reality: cognitive, social, emotional, physical but also less tangible dimensions such as levels of belief systems and inner experiences. Development and learning which are seriously hampered by chromosomal or brain impairment can be greatly modified if interventions are ecologically based. This study confirms that Mediated Learning Experience and the organization of an Active Modifying Environment can be potent factors in the development of low-functioning children, provided the concept of MLE is understood as multi-dimensional and is not turned into an ideology.
Implications of this synthesis for education and research are discussed.

Introduction: Towards Ecological Research in Development

Development is a complex process of interplay between genetic and environmental factors. Developmental psychologists are becoming increasingly aware of the narrowness of a reductionist perspective and the bias of developmental theories, which are highly genetically loaded and influenced by (neo-)Darwinism. To understand a child's intellectual, motor, social and inner development, it is absolutely necessary to look at the ecology of human development (Garbo, 1993; Moen et al, 1995).

Bronfenbrenner proposes a theoretical model of development containing four concentric contexts (Bronfenbrenner, 1981). The micro-system is the nuclear family, the extended family and school; the meso-system is the interaction between the systems of the micro-system; then the exo-system is the environment that comprises the neighborhood and the family social support systems; and finally the macro-system is the cultural context of society, with its conceptions, socio-economic situation, definitions of classes, etc.

If intervention in child development is to be effective, one should depart from the classic intra-psychic or physical point of departure and address interaction on micro, meso-, exo- as well as macrosocial levels (Bronfenbrenner, 1981). In reviewing the evaluation studies of the different approaches of the 'Head Start' program - a USA nation-wide massive early intervention program aimed at prevention of mental retardation in disadvantaged children - Bronfenbrenner found that the only intervention programs that had any lasting effects had two essential ' elements: "The first was involvement [our emphasis J.L.] of parent and child in verbal interactions around a cognitively challenging task. The second was ensuring and reinforcing the parents' status as the key person in the child's life" (Bronfenbrenner, 1981: 199). Many studies show that intervention on the social support system positively influences outcome in retarded children's developments (Dunst et al., 1986; Kirkham et al., 1986; Kogan et al., 1974 a & b; Moen et al., 1995). But few studies explain in detail how this social support functions.

Although these studies may explain some phenomena to a certain extent in their generality, they do not provide enough insight. Whilst the importance of the ecology of development is increasingly agreed upon, the way in which this works is less clear: What is meant by "involvement", "key person", "support"? What does "concretely", "in daily life" mean? This is the objective of this research.

Measurement and Understanding

Over the past 15 years we have been examining the cases of many children with learning disabilities of all degrees and etiologies. Many methods of pedagogical or psychomotor intervention aimed at enhancing development and learning in individuals with brain and/or chromosomal damage were reviewed. Often discussions were held between clinicians and scientists as to whether a particular approach helps or not. There is a fundamental problem with effect studies.

Often the scenario is as follows: the inventor of a certain approach tries to prove the effect of his intervention with numbers in statistical analyses. However, following a time lapse there are others who disprove the reported beneficial effects and conclude that the method does not help. Usually, clinicians or people working in the field report that they see children improve, even according to well-set criteria, which however do not become visible in statistics. This scenario has been observed in respect to Mediated Learning Experience technique with or without Instrumental Enrichment (Feuerstein, et al., 1980; Blagg, 1991). Another example is the supposed effect of techniques of psychomotricity in improving cognitive functioning. One assumption was that teaching better laterality would positively influence the child's reading capabilities (Nakken, 1983). Another theory tried to prove that creeping on all fours was essential for the child's general cerebral development (Thomas & LeWinn, 1969). Therapy programs were based on such assumptions. Later, critical evaluation studies appeared to disprove these assumptions (Tomkievicz, 1987).

Such claims and counter claims are not very fruitful. Quantitative measurement can be interesting for a number of reasons. But, alone, it cannot be used to determine whether or not a method helps (Hadji, in press). If one really wishes to understand what helps a child in learning, and how, a qualitative method must be adopted. Quantitative and qualitative research serves different purposes.

In order to understand, a first condition of a qualitative approach is to approach the child without any prior ideologies in mind, and with no need to prove anything. There are many ideologies regarding development and learning which possibly interfere with such an open research spirit. Even Piaget's theories on the genesis of concept formation, conservation of constancies, number, etc. – however great – risk becoming ideology the moment one is confronted with a learning disabled child in need of help.

For example: there are educators who base themselves on Piaget's theories to refrain from teaching numerical skills to Down Syndrome children as long as the children have not yet acquired the concept of numbers; or from teaching children to read on the grounds of a low IQ and deficient conservation of constancies. Based on this assumption, up to the eighties, many Down Syndrome children were denied access to reading and writing skills. This has changed over the last decade (Oelwein, 1995). Chromosomes have not changed since the eighties, but the ecology of Down Syndrome children is now in transition. The degree of damage to the child's nervous system is only one of the limiting factors and a priori not the determining one.

Aspects of a Qualitative Ecological Methodology

All research starts with a question. A particularly relevant question, clinically, socially, politically and on a purely human level is as follows: Can differential development of Down Syndrome children be explained by a natural "bell curve-shaped variance or is it to significantly influence it?

This can be translated in down-to-earth questions such as: How do brain-impaired children learn new things? How do they react to learning something new (a concept, a skill), to change, to their world, to the awareness of their limits? What do children and parents experience when trying to overcome difficulties in development? How can one de-block a blocked development? How does the quality of relationship influence learning? From whom does the child learn something, what kind of attitude has his teacher?

To answer these questions, a qualitative research method is the method of choice in a first phase of making hypothesis and theorizing. It can lead to valid data and some form of grounded theory (Glaser & Strauss, 1967). In a qualitative approach the researcher uses, together with objective descriptions, his own subjective experiences as a tool of observation. The quality of the data depends on the quality of the researcher-subject relationship (Lafaille, Lebeer, & Mielants, 1995). Research protocols are flexible as new questions may arise when new data appear. Various materials are used and combined, such as: open interviews, notes from participatory observation, video recording. Contrary to statistical analysis, in qualitative research the process of interpretation and reporting is done in constant contact with the subjects. In reporting it is very important not to neglect significant details which are often missed in more classic, quantitative research methods. The researcher shares his reasoning, questions, findings and doubts with his readers, unlike statistical "objective" reports.

A preferred method in ecological research is participatory observation. The researcher becomes part of the subject's ecology. Observation of one's own behavior and inner experience is as important as observing the "subjects". Intervention can be directed at the child (e.g. trying to teach something really new and difficult to a child) but this cannot be understood unless one experiences oneself, how difficult it can be to learn something really difficult which exceeds one's own capabilities. An analysis of children's histories who mastered a certain developmental stage, inquiring what had helped them to do so, can give a lot of useful information. A qualitative approach does not choose to make any attempts to make an "unbiased" representative selection, count results or make statistical predicative calculations. Neither does it look for determining factors. It rather aims at drawing a map of the complexity of learning ecology. This does not make it less scientific. Analysis of a "good" case is a valid method because it can yield interesting hypotheses regarding development: One cannot study processes of development when there is no development. However, in order to avoid premature conclusions and over-generalization, care should be taken to compare a "good" case with contrast cases and to distinguish between hypotheses and facts, and to discuss hypotheses with colleagues as well as research associates (the subjects).

Examples of Ecological Intervention

Two Down Syndrome Girls

Following is a comparison of similar cases with a differential outcome.

Amanda and Carla are 22-year-old women with Down Syndrome. Both had cardiac malformations: Amanda was operated on at the age of 4 and 6 and Carla at the age of 3. Their health conditions were similar: They both suffered from frequent recurring respiratory infections until the age of 6. They belong to families of the same socio-economic status - middle class, regular families with very devoted, loving, supportive and involved parents. Amanda is an only child following the accidental death of a sibling; Carla has a younger brother. They have similar overall IQ's of 58.

Their development and functioning levels are, however, very different. Carla lives with her parents and grandparents, is taking a secretarial course and works part-time in a kindergarten school. She moves around the city independently, using public transport, goes to afro-dance lessons, has her own bank account which she manages herself, and does shopping for her family. Every week she helps out in a program for Down Syndrome peers aimed at teaching then to become more independent. She uses complex understandable language and has learned a second language which she is able to read and speak a little.

Amanda lives in an institution during the week, where she performs all kinds of practical activities. She is under constant adult supervision and has little independence. She is quite capable though in reading and writing and has a fairly wide general knowledge.

Amanda and Carla would qualify for "high social support" and "high parent involvement" in quantitative studies. But how is it that their development levels are still so different? Theoretically, one could say the difference is innate. Another hypothesis is that the difference is due to a difference in ecology. First of all they live in a different country: Amanda in Belgium, Carla in northern Italy. This is significant as attitudes towards Down Syndrome and integration differ substantially in both areas. In Italy all Down Syndrome children attend normal schools, where they learn reading and writing skills, arithmetical skills, history and geography. In contrast, mainstreaming is extremely rare in Belgium where 100% of those diagnosed as Down Syndrome children are referred to special education classes. These are all located in separate schools, where objectives are generally low and adapted to the low mental profile and IQ of the child. Amanda was a pioneer case. Hence, their macro-systems - in Bronfenbrenner's terms - differed widely. In order to understand the exo-, meso- and microsystems, let us take a look at their history.

Carla's ecological history

Carla is the first-born child of a bank administrator and a teacher. Her mother reported that due to her delicate health, during her first three years, major attention was placid on sheer "survival". As she spent most of the day laying still, Carla was like a dry sponge, eagerly absorbing every stimulus. Most waking hours were spent "conversing" with her mother, grandmother and other family members: "I admit we talked to her a lot" They explained the world to her by talking about everything, explaining who is who, what was what, reading booklets, telling stories, singing. Her mother used to make up stories in which Carla played a part, which she recorded, to be played back when she was at work. Carla loved replaying these cassettes over and over again.

When she came home from work, her mother would teach her colors, words to describe space, like "this is on, and that is under the table"; "this is in the box, and this is out of the box", stressing words "in" and "out"; counting, forms ("this is square, that is round"); time concepts ("now it is daylight, but after TV it is night, then it is dark", etc.). Everything was presented systematically as it appears in the natural course of events, but with much more repetition and intonation. The mother included these ingredients in her stories so Carla would acquire concepts. "Because I am a teacher, I know what is needed to enter kindergarten, so I anticipated everything that she would need for kindergarten." Since Carla was the only small child in the extended family, there was plenty of interaction with adults. Carla always used to accompany her parents when they went out.

At the age of three, Carla hardly spoke a few understandable words, was barely able to walk and play. Rather than waiting for maturity, Carla's parents sent her to kindergarten, "because all children do that at that age, and it is important for her to be with other children; it is good for her development." Her mother said that she was sure Carla would master all the necessary concepts upon entering kindergarten. But how she knew that, she could not tell. It was more like a conviction, an intuition.

Carla remained rather passive during the first months in kindergarten and did not dare to speak a word. One of her teachers was pessimistic about her development, stressing mainly what Carla could not do. Despite this adverse belief system, Carla gained rapid progress in language and conceptual development. Her mother said that pessimistic test results did not matter to her, she just continued to believe that Carla would one day show she understood.

At the age of 6 Carla entered elementary school - the same school where her mother worked.

She was the first Down Syndrome child in the school. Although all handicapped children in Italy have a legal right to be in a normal school, it was a real challenge for the whole school population. Carla was still far behind her age peers. In order to promote focusing, small heterogeneous learning groups were created. Carla quickly learned to read. After a few months she was no longer in the lowest reading level. Writing and arithmetic were not taught by special methods - they were just taught to her as to anybody else - only with more exposure, more patience, more repetition and for longer. Tests were carefully planned, without threat, precisely defining objectives. When a bad test result happened to depend on an awkward teacher or a bad moment, they just did the test again with a different teacher, until the result was satisfactory.

A lot of time was spent doing homework. It did not "cost" Carla's mother much effort. She said: "I loved to do it, because she was so motivated, and it was successful. I had to teach her everything again and again, but she took everything in eagerly." Mother was very strict with her, being consistent with rules, cutting short temper tantrums. Carla had a special notebook: in it, she was encouraged to relate an event or an impression of what had happened, and her mother helped her to express it verbally. They contained sentences like "Today Gianni had her 7th birthday and we blew out the candles."

Carla was able to go to school together with her neighborhood friends. She continued to develop relationships with non-handicapped people. During the summer the family would change their ecological environment completely, moving to the same mountain village every year. There, too, her mother would pull strings, not anxiously tightening them, but carefully making them invisible. "It was difficult to watch Carla going to the square, waiting there in vain for friends to come, and seeing her return alone," her mother told us. "In the beginning I did not dare to ask anybody," Carla said, "but after a while, I did." Sometimes she was invited, sometimes she was not. In this way she learnt to withstand frustration, to exercise hope and patience and assume responsibility. And so Carla built up a circle of summer friends and was well accepted despite her slowness. She became a member of a football fan club with her summer friends and separately from her father's and brother's clubs.

At the age of 12 the time came for Carla to emerge from the comfortable cocoon of elementary school and move on to a larger scale middle school, multiplying relationships and challenges. She did not utter a word throughout her first year, until her teachers had the bright idea of selecting Carla for the lead role presenting the school show. This also greatly influenced her cognitive performance as the middle school program was quite challenging. At the age of 13 Carla was able to calculate the area of a rhomboid, understand and apply Pythagoras' theorem, and translate simple sentences from Italian to English. At 14 she had reached the age-limit for compulsory schooling.

Her parents found a private high school preparing students for kindergarten teacher training, with a team which was willing to take Carla as well as her difficulties on board. Here Carla's parents were an exception in choosing higher education rather than resigning themselves to occupational training. In order to go to this school, Carla had to learn to take a bus, even two. The first week, her mother taught Carla everything, including what could go wrong and possible solutions. Then she practiced for six weeks with her grandfather. At the end of the sixth week, she happened to be so involved in a conversation on the bus that her grandfather got off by the school, but she missed the stop. She smiled and waved at her grandfather, who was worried she might get lost. But she found her way back alone. This showed that Carla was ready to go to school alone. This event proved most significant.

Carla had learned to trust herself, that whatever happened, she would be able to sort it out. Her mother had learned to let go. By going to high school, Carla also grew up as a person, leaving her childhood behind. It was challenging, both cognitively as well as socially. Cognitively, because she took all the exams like the others. She learnt to write papers, for example, she once wrote a paper about chromosomes and inheritance, thus learning also that her problems were the result of a chromosomal accident. She went on an apprenticeship in a kindergarten and then submitted a report.

Amanda's ecological history

Amanda is one of the first children with Down Syndrome in Belgium to have been mainstreamed. At the age of 4, she started her school career in a special education school because this was customary. Her mother had always "invested a lot of time" in her to teach her basic concepts and behaviors. At the age of 9, she was still not able to count or perform simple calculations, nor read or write. At that time her mother learned of a special stimulation program which was known to be able to improve Down Syndrome children's performance¹. She took Amanda out of school - much against professional advice - and started the program. This consisted of five hours per day physical exercise, part of which was creeping on all fours, hanging on an overhead ladder and running. Reading was taught using whole word cards, and general knowledge was 'pumped' in by reading self-made encyclopedias. Gaining a feeling of competence in the reading area quickly spread to other areas of her development. A private teacher was hired to start with numbers and arithmetic. She grasped concepts of numbers, tens, addition and multiplication by using rods of different length and color (Cuisenaire rods). She also learnt to swim and ride a bicycle. After a year, performance had increased so much that it was decided to put her into mainstream school. This was not an easy challenge, as normal schools in Belgium demand a minimum standard cognitive level and learning speed. It is still extremely rare for a Belgian child with a disability, a fortiori an intellectual deficiency, to be mainstreamed. Even slow learners or children with very mild retardation are referred to special education. It can therefore be understood that this mother's plan met much skepticism and even open resistance from professionals. She did, however, pursue her goals. Amanda started with only a few hours schooling a day, the morning being spent at home studying. Mainstreaming was successful until the 6th grade. Then it was impossible to find a normal school prepared to take her, as they all considered the name of the syndrome rather than the name of the girl. So she was put into special education, although in a higher level than other Down Syndrome adolescents. She continued to make progress, but from then on, her social contacts were largely confined to special needs adolescents and the challenge level was much lower. Asked why she thought Amanda developed her reading capacity so well, her mother answered: "I believe it was partly because I invested a lot of time in teaching the global word method using whole word cards, but I consider the physical exercises essential. Particularly creeping on all fours, which we did everyday for an increasing number of meters, eventually we did 750m. a day. During periods when Amanda did not creep, she did not make as much progress, even though she continued to use the flash cards."

Even though both are positive exceptions in their country, these cases display salient differences in social development: Amanda is adjusted to living in a more separate and protected world of the handicapped. Carla is a much more independent person, living in the open community, and she has developed additional competencies to do so. This does not mean that Amanda is not potentially capable of doing the same, but the fact is she does not. How could one explain this? Firstly, their meso- (school, neighbors, friends) and macro-systems (society, culture) differ widely. Amanda's family was under much more social pressure to conform to the image of a 'mentally handicapped' child belonging in a special environment.

Their exo- and microsystems also differed, although on the surface an equal amount has been invested in cognitive development by both nuclear families. The notion of critical period and early intervention seem to be flawed by these cases. Paradoxically, it appears that Carla's cognitive development was unattended during the first three years. Moreover, her expressive language development started much later. What makes Carla's case especially interesting is that she has not participated in any special program. Not nutritional supplements (cf. Schmid, 1987) or early intervention programs or cognitive stimulation programs, etc. Carla's case alone dismantles the supposedly inherent effect of methods. Clearly, it is not "creeping on all fours" which makes the difference to reading or numeric ability, neither early intervention, nor a special technique. Can we therefore conclude that Carla's high development is simply due to a superior physiological variance? The answer is negative as this would be premature. There could be a major difference in learning opportunities. It is difficult to look at this retrospectively but the data do provide some important clues. Listening so often to the home-made story tapes must have enriched Carla's language tremendously. Carla's mother's stories were not just fun stories but were full of intentionally introduced concepts. She would do what regular parents tend to do but with increased awareness, intentionality, intensity and frequency. She explained "the world" to Carla as a tourist guide in China. It was as if the "ecology" of the family synergistically worked together to provide an enriching environment, providing Carla with all the required developmental input. They practiced a developmentally staged program (such as Portage Parent Training or McQuary Steps Program) in a less artificial and more intuitive and creative way. In "Amanda's case his happened less, as she attended special education from an early age.

Subjective experience of learning processes

Some more profound questions are generated: What is meant by 'being directed at survival only'? Was it only listening to the tapes, or did something else happen? What was the subjective value of being in a normal school, treated with respect, dignity, ensuring success in learning experiences? What did Carla and Amanda experience when they were confronted with all these utterly impossible situations (to the onlooker): what did they experience when they learned to write with a pencil; when they were in class for the first time? Why did Carla decide to stay mute for a year, what did she experience when she was on stage for the first time, when she was waiting for friends to come to the village fountain and nobody came, when she went a stop too far on the bus? What did she experience when the 'tifosi' (fan club) celebrated her birthday?

Carla said that the only thing that was really difficult was holding a pencil. She almost denied that her teaming process was difficult. Indeed, it was her mother who said it was difficult. Carla, though, could very well describe her feelings of frustration and loneliness. But difficulties seemed to be natural parts of life to be overcome in her eyes. When she went to the bus stop for the first time on her own (at the age of 14) she concentrated on the goal rather than on her anxiety. She knows that she has Down Syndrome, what it means, what the problems are, its origin. She wants to help smaller children because she does not want them to be left alone (so she knows the importance of an enriching relationship) and she wants to help peers in her age-group who are less well developed (because she knows the importance of experiencing independence).

Similarly, Amanda experienced her primary school years among more able children as a pleasure. Friendship was the most important motive to go to school. Going to school was a reward after working on math at home. Also learning to read and write were important goals for her. She was fond of her home teacher. She took all the physical exercises because her mother insisted on doing them.

The impression of a lack of cognitive stimulation in Carla's early years was only superficial: the emotional tone in the mother's voice indicated a strong emotional bond: survival meant more than staying alive, but the attention was on a level of the inner soul. She wanted the child to blossom and not stay as she was.

On the one hand it looks like both Carla and Amanda were almost protected from experiencing true failure. Parents and teachers systematically stressed their competencies rather than disabilities. That seemed to have been a tremendously motivating factor. Every "mistake" was considered an opportunity to learn. Carla's notebooks also had a special significance. They were like diaries. Of course, they gave an increased learning opportunity, "exercising" at the same time verbal expression, semantics, grammar, spelling, writing, drawing, expression of emotions, time concepts, all cognitively very challenging. The fact that when we were reading it together, everybody was moved, indicated that there was more to it. It was Carla's way of recapitulating experiences, placing them, ordering them and giving meaning to daily life events.

The mothers' attitudes seemed to be similar in being rather controlling. They carefully "pulled the strings": By being in constant contact with teachers, by discussing difficulties and options to adjust to them, where to place extra attention, etc. A difference is that Carla's mother did not prevent her from learning to experience anxiety, responsibility, choice, failure, adolescence, contact with small children, whereas Amanda hardly had opportunities to learn to deal with them. From the outstart both parents were very protective of their child, then they chose to expose the child to challenging experiences (primary school). However, Amanda's mother never dared to let go of her fear of a road accident (which had killed her first child) - she directed the child continuously.

Observations in Other Children

We will now proceed to draw a comparison to another Down Syndrome adult – Lilien. Lilien is 19, yet on an academic level she is low functioning. She can read, but she hardly uses this skill. She talks in short sentences. She is not able to do any arithmetic, despite regular attempts in special school and at home. Her school administration concluded that after the age of 19 it no longer made any sense to try and teach her numbers and that she had reached her mental ceiling.

However, in a dynamic assessment using Feuerstein's LPAD (Feuerstein et al., 1979), her learning abilities — particularly understanding numbers and operations — became evident, so she started to learn numbers again. She had always attended a special school where she was happy, and where she followed a rather concrete program, directed at instructing her how to behave in well described and controlled circumstances. On the other hand, through her intensive contacts with family and non-handicapped peers (via youth activities), she is socially well developed.

There was a striking discrepancy between Lilien's low cognitive functional level and her fairly high social level. Could the lack of functioning be due to a lack of opportunities rather than an innate incapacity, as was the preferred explanation? LPAD revealed a persistent learning capacity despite her age. She was given more opportunities to experience learning by going on holiday with 'normal' peers and family members, which she loved. Cognitive learning was not considered very important, so less was invested, except for reading. This lesser functional development, however, had a detrimental effect on her overall adaptation capacity. Lilien lived in a school environment which passively accepted her inability to count and limited abstract reasoning.

A similar consistent pattern has been found retrospective qualitative research with children with various etiologies of brain-impairments in varying degrees of severity (Lebeer, 1994). Preliminary qualitative observations in a long-term prospective study with 30 low-functioning children aged 5-11 show that reading, writing and arithmetical skills and actual social functioning are highly dependent the quality of involvement from the environment (child-parent, teacher-wider environment interaction. People use different methods to arrive at their goals. For instance in teaching to read, some use whole word cards without picture matching such as described by Doman (1979); others combine these with matching words and pictures (Oelwein, 1993); others use direct differentiation with the alphabet – a more classical method. In teaching mathematics, some use their own intuitive method, others resort to special teaching programs. What they have in common is the adoption of visual spatial tools in the representation of numbers, intensity of training and mediation. Although methods widely, a common process of inner experiences can be identified despite individual differences.

Mapping Inner Experiences in Learning Processes

Parents as well as children go through a series of inner processes which have some common characteristics. Whenever they realize that the child does not develop as expected, parents have overwhelming feelings: e.g. grief, guilt, sorrow, anger. This can be paralyzing and lead to passive acceptance. Some parents persist in this phase: There are parents who do not seek and do not follow advice when it is given. The situation is lived passively – according to the situation. They do not see any positive meaning and consider the child a constant source of unhappiness. Others do not accept the situation as it is and seek alternatives. Often for quite some time a lot of energy can be invested in belief systems and programs which promise spectacular improvement. This can be helpful for a while. Sooner or later however, parents discover that intervention does not work as easily as they would wish. This, and other confrontations with reality (e.g. the child does not develop as quickly as wished, the environment does not accept the child easily or treats him disrespectfully, professionals and partners are not supportive, etc.) may provoke feelings of being victimized (by school, society, by the defect, doctors, partner, etc.). This may be accompanied by a feeling of anger towards everybody. Many parents remain in this state, as "angry victims." They can be friendly on the surface, but angry inside. In this state parents can become quite energetic to fight the environment. But this can also block a supportive parent-child relationship and it can block a cooperative relation with the environment as people tend to react defensively towards aggression, even if it is hidden. Cooperation received from people outside the family is absolutely essential to the child's development.

Then there can be a phase in which one looks at one's experiences as they are. In dealing with these one may discover the meaning of grief as a source of true compassion (not as self-pity), which is needed to help the child to grow. Or the anger in oneself and in the child can be seen as a source of energy in order to acquire the ability to say "no!" For example to one's own narcissistic expectations, to negative belief systems expressed by some professionals, to disrespectful treatment. Then sometimes a renewed will is born which yields the necessary energy. For instance to reconsider objectives in life, to fight for respectful treatment and rights. Recognizing one's own distressed feelings can lead to a more genuine relationship with the child. A genuine relationship means that one looks at the child as he is. Sometimes the child needs true compassion and adequate help in order to experience success in mastering some difficulty. On the other hand low functioning children tend to be very manipulative and try to dominate their world because of their feelings of incapacity. Adults tend to give in at first. This leads to blockage in the child's development, because in this way the child never learns to grow and choose. In going through this conflict parents may discover that the child's true will (the will of the inner self) may be different from his "wants" for immediate gratification. This is another aspect of choice in development: it is not something which can be enforced, but it can be elicited. It is difficult to make a distinction between a child's real incapacity and resistance to growing. Resistance to growing can be unwittingly reinforced by adults who love the child but do not elicit his will to grow by passively accepting their child's helplessness. They want the child to always be comfortable. But parents of children who developed further than expected (on the basis of the inherent defect) did not want the child to be comfortable in the first place, but to develop into an adult human being. Comfort of course is important at some stages and at times, but sometimes going through anxiety is what is necessary, as in the case of Carla's bus trip.

Parents who have acquired a state of awareness, such as Carla's mother, seem to be more relaxed, creative in finding solutions, dealing with different methods in a critical way, accept limits and go beyond others, accept their own limits as well, invest a lot of educational effort when needed, etc. They learnt to be that way because they opted for development rather than passive acceptance.

Children also go through a similar process. All children (and adults as well) have phases (sometimes recurrent) in which they choose not to grow, to withdraw, to resist change, (to stay the same, to escape challenge and learning, this is the tendency to stay in a baby-like state, the longing for Eden. Handicapped children have this longing even more. They love to play in warm water, stay in the |bath tub for hours, love teddy bears for a long time, like to watch romantic TV series dreaming of paradise (this is not a prerogative of low functioning people!). Often the environment reinforces this tendency because it believes that this is a worthwhile objective, that "handicapped children should be (kept) happy in the first place." Institutions are often based on this assumption. The film Rain Man is a prototype of such a passive accepting environment. There is a tendency to build comforting "snoozing rooms" in institutions for severely handicapped children, with soft colored lights, soft surroundings, soft music, where children can lay on soft carpets and be "happy."

The child has a tendency to remain in a kind of status quo (be it in a behavioral sense, cognitive or motor-wise), until there is someone in the environment who challenges the child to go on. This creates conflict.

On the other hand, there is a dimension in the child which wants to learn and progress. But this is also uneasy, fearful, uncomfortable.

Dealing with resistance inside and outside is a painful process: discovering that things do no go easily, that the body does not follow one's will, that the environment is not always (understanding and supportive, that one is often alone. Growing up is painful. Assuming responsibility (often when one has to or when there is a need to) is not pleasant at first sight. Children who choose to go through this process seem to loose some of their innocence. Once he has "done with" his resistance, he can feel joy in the process of acquiring competence, even though objectively things are very difficult.

It is this loss of innocence which gives people like Carla a different impression, as if she had a different energy, in the sense that she did not seem like someone with Down Syndrome. She had quite a normal appearance, although the classical facial features were apparent. People in her neighborhood (and we as researchers) forgot the syndrome label and dealt with her as a person with a name. This is an important distinction with other children where the name of the syndrome was almost always at the foreground, determining interaction. In this way parents' and children's processes are similar. The effect on development is clear in the above examples. However, it is unpredictable.

In discovering what these parents and children experienced in handling their difficulties, it became clear how close their experience matched the everyday experience that we as researchers had in our own lives. For example: trying, as a totally inexperienced adult, to stand on a skateboard, to speak a second language, to learn a new complex computer program, something never done before, evoked exactly the same process of resistance, helplessness, anger, victimization, and an (inner) call to assume responsibility, as observed in the brain-damaged children and adults around them. One's first driving lessons are also reminiscent of a similar experience. Looking at the issue in an interactional way suddenly changes one's perspective.

Interpretation & Hypotheses

There are other cases described in the literature which are very similar to the ones described above, in which one can discover similar processes (Carlson, 1953; Engels, N., 1993).

Action Depends on How the Problem Is Defined

In the case of an arrest in the child's development it is difficult to distinguish between a neurological obstacle and an interactional perspective. The former is more "easy" to accept because it allows the environment to stay passive towards learning possibilities, whereas the latter attitude leads to enhanced responsibility for adults and child. This is well-illustrated in the above cases. It is striking that the development of the children examined differed widely despite a similar psychometric value of "cognitive functioning" – IQ. This is a confirmation of that IQ is not a reliable measure of learning potential (Feuerstein et al., 1979) nor cognitive functionality (Ceci, 1990). Maybe IQ is just a measure of factor g after all, that tells us little about the person's capacities?

However, many people consider IQ or other developmental measurements predictive. Every adult constantly creates his (or her) little theories and decides upon his actions based on these theories. The fact that the way in which the problem is defined also determines action, is something which seems self-evident but the consequences are far-reaching. When a child does not perform a certain function, there is a tendency to label this as an incapacity (pointing to the child as the cause) rather than look into ecological factors, such as relationships. Looking at development in a relational way changes the kind of interventions and definitely the outcome. So, when the environment believes that the child should be able to write, people intuitively seek methods until the child is capable of holding a pencil.

Different therapists yield different results even while using the same methods. This is very important in comparative evaluation studies. The differences in successes of a certain method could be due, not to the method itself, but to the way these methods are applied. Parents/therapists going through creative processes yield different results to those who merely apply a technique.

Looking at Down Syndrome in this way can inspire a number "of interventions. Down Syndrome children have the common characteristics of deaf, hyperkinetic and dyspractic children. This means that instructing have to be presented in a visual modality and in a piecemeal way: Only one instruction at a time. Visual presentations in calculation methods (a dice model, spacing, etc.) are examples of Vygotsky's and Galperin's psychological tools in mastering concept learning (Van der Veer & Valsiner, 1993). The odds are that "creative" parents and therapists do not rely on a theory but come to this experience via entirely different ways. They are ahead of theorists.

Seeing Down Syndrome as hyperkinetic (and assuming the cause of hyperkinesis as an overflow stimuli) led to the inference that only one stimulus should be presented at a time, while concealing too much input. But that is what successful parents did: When you enter into a genuine relationship with the child, it is as if the child knows the answer and gives some clues to a solution of a certain problem. The adult therefore needs to tune in to the child and discover what the child needs. However, in our experience, "tuning in" can have different meanings, depending on the adult's conceptual system.

If one believes in a child's potential, one really discovers more possibilities. This is called the Pygmalion-effect (Jones, 1997). Lack of belief leads to a lack of action. Too much belief, however, leads to blindness towards reality. How is it possible to distinguish between the two? There is no rule, only being "in tune" with one's inner experience will be able to tell. This is called intuition.

Dealing with Inner Experiences

The above case histories illustrate the importance of looking beyond behavior towards inner experiences. A process can be identified similar to the process of will development discovered in exceptional cancer patients (Rijke, 1985). Rijke describes this as an evolution from being a victim towards becoming creative. If one becomes more a "participant" in life's processes rather than a fighter, one becomes more oriented towards inner as well as outer reality in an attitude of open-mindedness. This process is repeated all the time: one goes several times through the cycles of victim, anger and participant. Bouncing back following disappointment is a classic. Being creative is not the same as being in harmony, it is accompanied by "storms". Going repeatedly through this process often leads to an enhanced capacity of will, of learning, and of going through inner processes.

This development of a will-process has been described by Assagioli (1979). Its phases and aspects can be recognized in child development, in the child itself as well as in its environment. In a child with a defect it is as if the child's will if not capable of finding the necessary coordination. After too many unsuccessful trials, the child stops willing, unless there is someone (a parent, peer, or therapist) who creates necessary conditions of experimentation, encouragement and small successes. The adult's will has to be stronger than the child's unwillingness to grow. Then the child's will can become effective in mastering coordination. Will can be trained. For brain-damaged children, will processes in acquiring basic skills (walking, writing, reading) are similar to those in non-brain-damaged individuals in acquiring complex skills such as playing the piano or walking a tightrope (Lebeer, 1994; Gelb, 1981; Alexander, 1987). Any unusual training requires a lot of will development. Will in this sense is not identical to will-power. Assagioli described different kinds of will: also "flexibility", and "letting go" are important aspects of will in skill acquisition. For example, Carla's ability to let go was equally important in achieving social competencies.

Organizing an Active Modifying Environment

The above case histories are also an illustration of the applicability Feuerstein's concepts of Active Modifying Environment and Mediated Learning Experience (Feuerstein, Rand & Rynders, 1988). All 12 criteria of Mediated Learning are well-illustrated. For example, reducing tasks or stimuli to small digestible steps is a form of mediation of intentionality and mediation of a feeling of competence. Regulating behavior in such a way that the child is structurally changed, by explaining the rationale of rules and supervising the child closely in the process of him becoming a member of the group at school (which entails many social rules), rather than just giving orders and rewards, are examples of mediation of regulation of behavior, and also the mediation of belonging. The process of learning to write (with a lot of physical mediation) are also illustrations of mediation of intentionality, feeling of competence, regulation of behavior. One could conclude that every effective intervention (effective in the long run) was the result of a sustained and repeated mediational interaction by the significant adults around the child.

Carla's educational environment was an "active modifying environment" in Feuerstein's terms: a challenging world, heterogeneous, frequently changing and confronting with new and unexpected things, which require adaptation. This brings a certain stress to the child, a need to become modified and a need to learn. Amanda's environment was also actively modifying but to a more limited extent. Lilien's world was even less modifying.

Organizing an "active modifying environment" is surely more difficult for the child, for his parents, teachers, educators and peers than resigning themselves to the child's limits as they are. But the result of it (provided the process is well guided and the child does not "drown") is the child's increased modifiability and higher cognitive-social and emotional functioning. Not only does the child benefit; they too have learnt to adapt, play together, take a slower child into account, and overcome egocentricity. Teachers benefit because they understand better what learning processes are, which is of great use for other children in the class. Parents benefit because this experience gives them a sense of meaning. Notice that "to benefit" is not the same as "being happy." Often the situation was not happy at all, but full of tension. But the underlying sense of meaningfulness and purpose is the most important drive. Happiness is not the goal, but a by-product of an attained goal reached after an endured will process.


This article has attempted to provide a picture of the complexity of the relationships between many possibly relevant influences on development: the physical, biochemical level, the level of emotions, belief systems, interpersonal relationships, behavior, culture and inner experiences. Understanding children's development demands such a broad perspective.

Starting from a similar level, the child's subsequent development can differ widely depending more on the ecology of the child than on innate characteristics (Ceci, 1990). Bronfenbrenner's statement at the beginning of this article proved right: parents were the key figures. What, then are the keys?

An attitude described by Feuerstein's concept could explain the observed phenomena. But the concept of Mediated Learning Experience (MLE) has to be refined: it contains cognitive, emotional as well as an inner experience level, which can be qualified as a "soulful" way of interacting, in the sense of the "I-thou" relationship of Martin Buber. In this way Viktor Frankl's concept of meaning (Frankl, 1978) has some relationship to the "mediation of meaning" by which Feuerstein characterized parent-child interaction going beyond the immediately visible. Seeing MLE as merely cognitive is a reduction that sometimes makes discussions regarding observation and effect studies sterile. Inner experiences are crucial in explaining development and social support.

Belief in modifiability is a necessary but not a sufficient condition if this belief is seen as an openness and not an ideology. Methods are tools – they concern the "what?" question (Rijke, 1985). Most important is the "how" question in development: How people are aware of their true inner experience (e.g. their attitude), whatever it is and how they deal with it. From this a will is born which provides the necessary energy and intuition to seek concrete ways to guide the child in his development and discover what is right. What one does (the methods, instruments, etc.) is not less important, but secondary. This explains why there are differences in performance depending on the attitude of the examiner, parent or teacher.

Mental ceilings can become ideological constructs acting as self-fulfilling prophecies. If one stops reducing the child's functioning to its syndrome (e.g. Down Syndrome individuals are mentally defective because they have trisomy in their chromosomal build-up) but relates to the child as he is (a person with a soul, a will, a self), one may discover new pathways in learning.

Consequences for Research Methods: Researchers as Partners

To perceive differences, researchers need to have experience, be open-minded and be involved themselves, yet at the same time keep a certain distance. In particular, investigating inner experiences is impossible to do in a materialistic and quantifying way, because they are qualitative. Researchers have to use their own experiences as an instrument. Every child is a unique, new phenomenological research project, in the true sense of the word. The child should not be approached with prefixed methods or concepts, but with an openness to reality. It requires careful observation (outer as well as inner), the creation of many hypotheses, looking for new data to confirm them or not, forming a new hypothesis etc. Methodology is not a recipe, but a process of logic. In ecological research, subject and object become more partners in research. In Prigogine's terms (1984): scientific observation ceases to be a monologue with nature and becomes a dialogue.

¹ A Doman-Delacato based approach adapted by the Brazilian physician Raymundo Veras.


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The authors wish to thank all those who cooperated intensively with this research project: in first place the children and their parents and teachers, to be considered first grade partners in research. A special word of thanks is due to the Foundation for Ecological Research, Rotterdam (The Netherlands); the Marguerite-Marie de la Croix Foundation (Tirlemont, Belgium), for making the project materialize. Thanks to Rudy Rijke (MD PhD), director of Workplace for Qualitative Research at the Foundation for Ecological Research, for his supervision – the project gained scientific validity. A final word of thanks to Alex Kozulin for commenting on an earlier version of the article.