Articles
Psychotherapeutic approach to parents of children with disabilities
María de los Angeles Abraham y Gloria Hebe Sosa
Published in the Journal of Psychoanalysis with Children, Issue 11 - August 2014
Abstract
This work examines how the bond between mothers and their handicapped children develops. They are part of the Early Consultation Program of the Psychology Service from the Faculty of Human Sciences of National University of San Luis. This Program has as mandatory requirement parents’ treatment in parallel with their children. This work deals specifically with the first period of treatment focusing on the analysis of cases where different feelings such as emotial detachment, overprotection needs, guilt, loneliness, as well as upset and anger at a deeper level, the situation arouses in them. Furthermore, the characteristics of the therapeutic bond, counter-transferential feelings and the difficulties this bond causes are put forward.
Key Words: handicap, early treatment, therapeutic bond
“Me dijeron que es Down, pero solo un poquito”
Mariela
Caring for parents of children born with a disability confronts the psychologist with a situation of such emotional content that they must call upon all possible resources to become an adequate container for so much anguish. These resources include analysis, training, study, supervision, and work within an interdisciplinary team that provides its members with the support that comes from feeling accompanied in the face of the complexity of these conditions and the strong emotional impact that shocks those around the baby. It is not only necessary to consider the need to confront the pain of others and seek the most appropriate techniques to address it, but also to recognize our own resistances and fears. Only after having traveled this path can we venture into the difficult task of working with the disability.
On this occasion, we will refer to the work with parents of children between zero and three years old, who were born with some type of developmental disorder. We had to face situations of strong emotional impact that at first were difficult for them to communicate and think: we could say that they had run out of words. When they were able to begin to speak, phrases like: "I was left without a floor", "I didn't understand anything", "I didn't believe in what I saw, or in what they were telling me" appeared. Only after going through the first moments was it possible for them to begin to give form to these feelings that accounted for the bewilderment, disturbance, and chaos in which they found themselves immersed. From our role, it was necessary to provide an appropriate emotional container for these parents who in the first moments become paralyzed and disoriented, distressed, angry and above all intensely overwhelmed by pain.
Early bonding as a structuring factor of the psyche
The desire to have a child begins to develop from the earliest years of life, and when pregnancy arrives, many of these feelings and desires materialize, opening up the possibility of recreating old bonds and projecting oneself onto the unborn child. The parents' personal history, their experiences as children, their desires, and their frustrations will forge their image of what they expect from their future baby. All these feelings and attitudes toward motherhood and fatherhood will mark the beginning of a bond that will be expressed with greater or lesser conflict, and that will define the quality of the attachment between parents and children. Furthermore, this early relationship, which at the time of pregnancy will face the concrete possibility of being realized, will have a highly structuring effect on the psyche of the unborn child. Beyond the conscious expressions of joy or rejection, of omnipotence or doubt, the future baby will receive this entire history with the strength provided by the affection that accompanies it.
In their book "The Earliest Relationship" (1993), Brazelton and Cramer analyze in careful detail these feelings and fantasies that accumulate in the lives of future parents, from what they call the "prehistory of the bond" to those that accompany the pregnancy period itself, in the "dawn of the bond." Aurora Perez (1998) suggests that a mental configuration occurs in the members of the couple, a design assembled from purely desiderative proposals, of what the baby will be like physically and emotionally, who it will resemble and who it will not, as well as the name that will be given to it. This prehistory has to do with those forces, both natural and social or environmental, that lead human beings in general, men and women, to desire a child. Pregnancy marks the beginning of a different stage: a dream crystallizes, a fantasy begins to transform into reality. These parents begin a relationship with a new being who already enjoys an identity, an early relationship, the "earliest" relationship.
Looking back to that prehistoric time, we see that a variety of experiences were combined in the parents, right up to the moment of birth, when, according to Brazelton and Cramer (op. cit.), three babies are combined: the fantasized one, the real and unknown fetus, and this concrete, real child. It is a situation fraught with strong expectations and emotions, which poses an adjustment to a child who is never the one the parents fantasize about. Therefore, they must process the loss of that idealized baby in order to make room for the concrete, real child.
Motherhood is often defined as the ability to take charge of the physical and emotional care of one's child, creating an atmosphere of tenderness and well-being between both. Although maternal feelings have been praised in various ways, Winnicott (1984, 1996) already pointed out that they are not so pure or so simple, since they involve conflicts, ambiguities, and ambivalences. They are ambiguous insofar as the baby is considered by its mother as both a part of herself and a separate being. "It is a reality of its own and a materialized fantasy" (Oiberman 2001).
On the other hand, just as maternal ambivalence is now spoken of, with its contradictory feelings of love/hate, the baby is now considered not as a passive, receptive subject, but as an active individual, capable of responding to and communicating with the world. Brazelton (op. cit.) considers that the baby's innate equipment plays a fundamental role in establishing the mother-child relationship. By this, we mean that we consider this relationship to be two-way, as both parties influence and modify each other. Kaye (cited by Oiberman 2001) refers to the "extraordinary transformation of the human organism from the newborn into a person... and this depends as much on the behavior of the adult as on the intrinsic cognitive capacity of the baby."
Current research proposes a rethinking of the belief that a newborn cannot see, hear, or distinguish elements of reality. On the contrary, it is now known that newborns perceive their mother's face and see clearly at a distance of 30 cm. Something similar occurs with hearing ability; from the sixth month of gestation, they hear their parents' voices and internal and external noises. A few hours after birth, the baby recognizes and prefers the mother's voice that they heard inside the womb. (Casper & Fifer, cited by Mathelin, 2001, p. 41)
Brazelton (op. cit) points out that infants are programmed to establish contact with those around them and need the responses of others to evolve properly. These concepts are expanded by the research carried out by Meltzoff, Trevarthen and Stern, based on observations of babies. While each marks his personal position regarding intersubjectivity in infancy, all three warn about the capacity of the young child to capture the emotional state of others. Meltzoff (1985, 1990) observes attempts to imitate some gestures, such as opening the mouth, sticking out the tongue, in babies only 42 minutes old, this imitation being clearly intentional. Trevarthen, for his part, considers that the infant demonstrates a crucial awareness of the feelings and purposes of his companions, prior to speech and language. Stern (1997) investigates the interpersonal relationships that are established between the newborn and his mother. It postulates that the first moments are crucial in the formation of experiences and that it is from these that the infant learns to relate to others.
A meeting that is a disagreement
The encounter between a mother and her baby at the moment of birth is marked by both her history and the infant's genetic makeup and intrauterine experiences. Added to this is what was previously stated regarding the baby's ability to grasp the signals, affections, and intentions of the mother or whoever fulfills that role, which allows us to affirm that between the two of them they build a form of intersubjectivity, in which each one organizes the other. We agree that the baby is never the same as the one expected and fantasized by the parents, which requires a re-accommodation to establish a new type of bond. To the extent that this process occurs with less conflict, the exchanges will also be raised in a healthier way.
But when a mark or a disability is present in the real child, and the distance between him or her and the expected, idealized baby is very great, the difference causes a real rupture in the bond. Sara Amores (2004) suggests that the greater the difference between the ideal child and his or her reality, the greater the psychological effort required by the parents to accept him or her. The birth of a disabled child marks a point of inconsistency, a rupture in the programmed family bonding organization, producing, in a way, a "non-encounter" with that real child who, on the other hand, seeks an encounter, a rapprochement, seeks a mother. If we consider that the maternal gaze, as Winnicott (op. cit.) suggests, is the first mirror in which the child looks at themselves, it is through her that the baby with a mark begins to grasp and feel that not everything is well. This encounter/non-encounter with a child who doesn't meet their parents' expectations, who won't be able to fulfill their parents' expectations for their development, brings with it a feeling of frustration, accompanied by intense anxiety, confusion, and ambivalence; this is what Piera Aulagnier called "encounter trauma."
The impact produced by a disabled child can be compared to the experience of a traumatic situation that surpasses the psyche's capacity to process it. In reality, this child is not like any other; it is, to paraphrase Jerusalinsky (1998), like "meeting the harbinger of death around the corner." It is equivalent to the impact produced by the uncanny. The parental couple, in an attempt to mitigate the reality experienced with these characteristics, activates defense mechanisms such as denial or dismissal. Denial entails a feeling of estrangement: "This can't be happening to me," "I can't believe it," "I'm seeing it and I can't believe it." These are some manifestations of this feeling and express a desperate attempt to distance themselves, to deny, to avoid contact with a reality that is very difficult for them. But it is also an indicator of a deep rejection, of a lack of acceptance of this new child with all his or her particularities. "My child is not mine," said a mother in one of her first interviews, and in this way she graphically expressed what we have been saying: the acceptance of a reality, and at the same time its rejection.
Dismissal is related to indifference; it would be the lack of space to record anything of reality. There is no representation, as if the disabled child had not been born or as if such a disability did not exist and were a mistake by the doctors. When this situation prevails in the parental couple or in the family, the possibility of containing, protecting, investing that child with love, and giving rise to desire is blocked, leaving him outside any probability of narcissization. If these feelings can be processed, suffered, and resolved, they will allow the necessary psychic energy to be used to enable a place of encounter where until now there had only been disagreements.
THE TREATMENT OF PARENTS
Ariel Pernicone (1999) points out that psychologists are not the same after the experience of dealing with parents of children with disabilities. He also observes that there are at least four aspects that must be addressed in these cases: the narcissistic wound produced by feeling that they have given birth to a child with a defect; maternal depression, which generally has unique characteristics and which becomes the most important obstacle in the process of humanization of this baby, since more than once it leaves the baby in a situation of emotional abandonment; the place that the child occupies in the parents' fantasy, and therefore the resolution of the mourning for the perfect child they dreamed of; and finally, maternal and paternal ambivalence, which can be observed in feelings of love/hate, death wishes and the consequent guilt. Caring for the mothers who consulted at the Early Intervention Service that we had inaugurated a few years ago at the Interdisciplinary Services Center of the UNSL, largely confirmed what Perniconi (op. cit) had stated. (1)
At the Service, we received consultations from children between 0 and 3 years old with various types of problems. We tried to provide a response that considered both the child and their parents, prioritizing the need to care for, reestablish, and sometimes strengthen the mother-child bond. Patients were seen by one of the team's professionals, usually a psychologist, who conducted an open interview and then a detailed medical history. From this initial meeting, and after discussion in an interdisciplinary team meeting, the next course of action was proposed or decided upon, always including the involvement of the pediatrician and the Early Intervention specialist. In specific situations, when the case so required, the child was evaluated by the speech therapist, physical therapist, neurologist, or psychologist.
Here we will refer to the psychological treatment of the parents, which was proposed as a necessary condition for treating the child. It is important to note that only one father attended a few interviews, and the remaining consultations were conducted only with the mothers. Their ages ranged from 15 to 36 years. The treatment proposal could be systematized into three stages: 1) initial interviews; 2) individual care; and 3) group care.
1) The initial interviews
These initial interviews were intended to understand and investigate the parents' diagnostic characteristics and allow us to propose the most appropriate therapeutic strategies. The mothers generally began their discussion by launching into a detailed description of their children's medical history, as if their mode of presentation were through the children's problems. In the case of the adolescents, however, they were able to begin talking about themselves more easily, but referring to relationship problems with their parents or partners. Strong reassurance from the therapist was necessary to encourage them to reveal themselves and present their pain. Talking about the pathology served as a way for some of them to distance themselves from their own anguish. They had generally received advice about the characteristics of their children's disorders and were able to elaborate on them at length. With the youngest, two of whom were only 15 and 16 years old, the themes revolved mainly around guilt: guilt for having had sexual relations with partners their parents didn't accept, for having been disobedient or mean to their mothers, among others.
While sometimes a child born with a mark, whether physical or intellectual, is considered a divine gift and invested with a mantle of religious bliss, it is even more common, as in the situations described, for it to be experienced as the permanent presentiment of punishment for sins committed. "...my mother always told me that God was going to punish me for everything I had done to her... and Francisco was born blind..." "...my father was so angry that he told me that he was going to have problems (the baby) for having relations with his younger brother..." During the interviews, the children were held tightly against their own bodies, giving the impression of being fused, attached. However, they were able to say very little about their child. This way of being with the baby, which is more of a fusion between the two than a bond, was repeated with variations in all cases. When the children had already learned to walk, the mothers showed great reluctance to separate from them, or to leave them in the care of others, even the same father. This meant that they often came to the psychological interview with the children, which was a real obstacle to establishing a therapeutic bond.
2) Individual treatment
This was considered a necessary condition for the therapeutic approach to the child. However, in all cases, the process was disrupted due to frequent absences, which were justified by the difficulty of leaving the child in the care of others. Attendance at the early stimulation sessions with the specialist, on the other hand, was expected. This attitude produced different reactions among the team. On the one hand, we felt that the child was being left to us to take care of. On the other hand, since the sessions with the baby were held in the presence of the mother, they often used this space to express their own concerns, complicating the professional's work and diverting her attention. This reflects the ambivalent nature of the relationship, leading them to bring the child to consultations and, in turn, boycott the treatment, attempting to occupy the specialist's attention themselves. In the few cases where the mothers' psychological treatment developed as proposed, the child's treatment progressed more effectively.
A very common behavior among mothers was to attend at times when they felt deeply overwhelmed by anxiety, using the session as a catharsis. At these times, they were unable to listen much, and all we could do was offer support and containment. The interventions they allowed were few and focused on working through the grief process for their child's disability. However, after these moments, the absences became more frequent, and the therapeutic process was reversed, suffering significant setbacks or halts. Beyond these manifestations, unconsciously underlying ambivalent feelings range from death wishes to the desire to care for and raise this child who has come into the world with less baggage than others. These death wishes for their child manifested themselves in different ways in all cases: in neglects that led to frequent hospitalizations, in slips of the tongue, in conscious verbal expressions always referring to past situations: “I wondered if it hadn’t been better…” They left the sentence unfinished. What did they mean? “That he had died? Or that he hadn’t been born?” Or they referred to longings to return to bygone times when the child had not yet arrived. The guilt that accompanied these feelings resulted in an overwhelming need for constant reassurance of the baby’s well-being, so they could not bear to be separated from him even for very short intervals.
This same ambivalence led them to seek and distance themselves from psychological help, either accepting and trying to confront their reality or resorting to denial and pretending it didn't exist. "He's Down syndrome, but only a little"; "I felt the need to know everything I saw, and I constantly tested it." In one way or another, they demonstrated the need for this reality to be changed, for it not to be such. In this eagerness, they jeopardized the bond with the baby, which was perceived only through the lack, through what the child can or cannot do. In other words, it's how they struggle between accepting and rejecting the flawed child.
Countertransferentially, these mothers evoked a sense of fragility and fear of harming them. The danger of falling into projective counteridentification was clear, and on more than one occasion we delegated our therapeutic role, falling into compassion or the desire to help resolve the specific obstacles they faced. Although there were differences among the mothers in terms of their children's age and the time elapsed since diagnosis, in general, all were in the process of grieving. As might be expected, mothers with a one- or two-month-old baby were in the early stages of grief, varying between denial and despair. We considered that only a few were in a more advanced stage of grief, although they maintained insecure attachment behaviors.
3) Group care stage
The therapeutic approach includes the mothers' inclusion in a psychotherapeutic group, either after or in parallel to individual care. The tendency toward isolation common among parents and families of children with special educational needs led us to propose a group treatment option. In addition to the therapeutic possibilities it offers, it provides a space for mothers to express themselves freely and share their experiences with others in a similar situation—that is, to avoid feeling alone in such a difficult situation. Previous individual treatment generally focused on working through the grief process parents face when faced with a child with an organic mark. Only when the crisis situation, with its associated high level of anxiety and confusion, has given way to the opportunity to reflect on their child and themselves, would they be ready to move on to this third stage. The decision was based on the fact that recent grief becomes an obstacle to entering a psychotherapeutic group, while the strong needs for continence and support can only be resolved in the dual therapist-patient relationship.
This initial individual process, in some cases and due to the aforementioned conditions, lasted longer than in others, which made it difficult to initiate group work as we had anticipated. Only two mothers were able to join the group a year after starting the Service, and another a few months later, so the implementation of this step has not yet been possible.
CONCLUSIONS
The experience allowed us to clearly observe the difficulties that arise in the early stages of the relationship with the baby, who in turn responds according to their own characteristics and based on the capabilities of their mothers or those in their place.
We considered four main aspects to analyze this experience:
A) The impact of the child's scar. Much of the work with the parents consisted of working through the traumatic situation, which they sheltered themselves from with defenses such as denial, refusal, or rationalization. While in one case the parents had previously known that their baby might have some malformation, this situation did not differ from the others. The shock that occurs in the presence of the failed child paralyzes them, and it's as if time stands still, leaving only that piece of flesh in their consciousness. The child must be cared for, undergo surgery, or undergo violent or aggressive treatments. In some cases, this also meant separation from the mother to be placed in an incubator or taken to intensive care. Our action at this point was primarily aimed at providing support that would later allow them to face the grieving process for the imagined child and the subsequent acceptance of the real child.
B) The bond with the child. In all cases, we observed significant difficulties, albeit with different characteristics:
The child was seen as an extension of themselves: they rarely put the child in the stroller and held him tightly against their bodies. They slept in the same bed and despaired at the thought of having to separate. However, they rarely spoke about their child. Although they barely took their eyes off him, their exchanges were minimal. In general, they were deeply afraid of the child getting sick, but this behavior actually masked their need to control their own aggressive impulses.
In other cases, mothers were so dedicated to caring for their children that they even offered obsessive care, which, as such, masked aggression and rejection. They constantly tested their children, trying to determine how far they could go, how capable they were, and how far their possibilities lay. These were young women who presented a permanent state of alert with a high level of anxiety and physical tension. What would this baby think about the intentions of a mother with these characteristics? How much could they have exchanged? To what extent would it be possible for her to recognize her child's needs?
A mother with clearly manic traits predominated in a different situation. Her little boy had Down syndrome ("a little," in her words). The bond seemed uneventful: she played constantly with the child, which was highly stimulating for him, especially with regard to the development of motor skills. In this regard, the baby developed as expected, learning to walk at one year old. However, rejection and hopelessness crept into the mother's speech when she emphasized the achievements of her eldest son, whom she considered "a genius."
Another group of parents was characterized by behaviors that could be described as abandonment. These were mothers and fathers who worked long hours during the day, and their children were left in the care of grandparents or employees. They generally rarely attended psychological consultations, and when they did, they used the opportunity to vent their frustration and anger at the professionals who treated their children. These parents were not only difficult to work with because they didn't attend, but also because they had a strong difficulty listening and accepting help.
C) The lack of a father: The fantasy of self-procreation that generally appears in mothers of children with disabilities (Amores, op. cit) leads them to feel solely responsible for what they have procreated. Therefore, even when a father is present, he remains aside and they find themselves in a distressing solitude. One of the axes on which we had to permanently direct our attention had to do with the need to help them to be able to give and give themselves permission to introduce the father. This process aimed at:
Resolving the guilt associated with the fantasy of having raised this "badly made" child alone;
Resolving their own conflicts related to the father figure, which will make it possible to give in to the child and trust in the father's ability to assume his role;
In cases where the fathers are truly absent, it becomes necessary to work through the other grief that the mother must process, which often completely permeates the bond with her child.
D) Characteristics of the therapeutic bond: The greatest obstacle appears in the different forms that resistance takes, which manifests itself in: difficulties in attending one's own therapy; occupying the sessions with the early stimulator to express one's conflicts and anxieties; not listening; or using that time only to carry out a catharsis and then be absent for two or three weeks. In all cases, the resistance had its origin in the difficulty in thinking about this child, in this reality that is presented to them, and in thinking of themselves as parents of a baby with a mark. As long as this is not talked about, the fantasized illusion is harbored that nothing is happening.
However, when the alliance is established and the parents can talk about all those unmentionables, their fears and pains, as well as their frustration, hatred, and death wishes, when they can allow themselves to be held and cared for by the therapist, they emerge with a different perspective; they can begin to create again. They can create that baby and allow themselves to be created as parents by it.
Note:
(1) We carry out this work at the Interdisciplinary Services Center of the Faculty of Human Sciences of the National University of San Luis, where an Early Intervention Program operates. This Service provides consultations to children from 0 to 3 years of age who present developmental problems and who come to the Center spontaneously or by pediatric referral.
BIBLIOGRAPHY
AMORES, Sara (2004): Having a Disabled Brother. About disability and family ties. LA HAMACA Magazine No. 11- BRAZELTON, Berry T. and CRAMER, Bertrand G.: The earliest relationship. Parents, babies and the drama of initial attachment- Paidós-1993 COROMINAS, Ramón and SANZ, Ma. Jesús: The physically disabled person and their environment- Paidós- 1995 DI GESU; M. LEUNTE, S.; PORTUGHEIS, C. and SOSA, P.: The family structure with a disabled child. XII Latin American Congress of Group Analytical Psychotherapy- Research / Groups / Gender
DOLTÓ, Francoise: The unconscious image of the body –Paidós- 1994FONAGY, Peter (2000): Pathological attachments and therapeutic action. In “Psychoanalytic Openings” No. 4. Virtual Journal JERUSALINSKY: Psychoanalysis in problems of child development. New Vision. Bs. As. 1998MATHELIN, Catherine (1998): The smile of the Mona Lisa. Psychoanalytic Clinic with premature babies. New Vision Editions – Buenos AiresOIBERMAN, Alicia (2001): Observing babies…. Study of an observation technique of the mother-child relationship. Editorial Place. Buenos Aires.PEREZ T., Aurora (1998): Early Bond and establishment of the early psyche. Journal of the Argentine Society of Psychoanalysis. No. 1 November 1998. Buenos Aires.PERNICONE, Ariel: The analyst’s position in relation to disability in children. Document from the seminar “Psychoanalysis with children”, given online (1999), through Psiconet.com/seminars/psa-childrenWINNICOTT, D. W.: The home, our starting point – Paidós- 1996.WINNICOTT, Donald W.: The family and the development of the individual –Paidós- 1984