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EmailDiscovery Through The Long Interview: Exploring The Experiences Of Holocaust Survivors Who Have Children With Developmental Delays
Discovery Through The Long Interview:
Exploring The Experiences Of Holocaust Survivors
Who Have Children With Developmental Delays
Melissa Tafler, MSW, RSW
Baycrest Centre for Geriatric Care
© Copyright 1998
I would like just to be silent
but being silent I lie.
Jerzy Ficowski “
The Execution of Memory”
I would like to dedicate this to those men and women who are survivors of the Holocaust, and especially to my father: Your stories, strength and will, in the face of unspeakable tragedy are a testimony to the human spirit, and continue to inspire me. What is the Experience of Holocaust Survivors Who Have Had Children with Developmental Delays?
INTRODUCTION
The birth of a child with a developmental delay (DD) is an experience for most families that changes the course of family life quite drastically. The literature speaks of major challenges for families of children with DD including: early attachment issues (Bristor, 1984), the accompanying grief and mourning process (Jackson, 1992; Moses, 1992) and parents’ emotional well being (Beckman, 1991; Konstantareas and Honrnatidis, 1992). Making meaning out of the experience of having a child with DD, and dealing with external meaning attributed by societal attitudes and beliefs are other common challenges to be faced (Fewell, 1990; Gill and Harris, 1991). Finally, dealing with the family-professional relationships, navigating services, resources, and external sources of support are complex and emotionally draining endeavors (Friend and Cook, 1996; Brinker, Seifer and Sameroff, 1994).
This paper will discuss these challenges, with a focus on parents of children with developmental delays who have survived the Nazi Holocaust. These individuals have suffered extensive atrocities which are distinct from any other population in our history. No other known racial group has experienced such a globally understood, clearly organized plan of extermination from the face of the earth. Perpetual long term exposure to the threat of death, torture, blocked aggression, separation from family members with no opportunity to mourn and total destruction of any previous sense of self, undermined the sense of basic trust and continuity with the past that a thriving, rich community of European Jewry once contained. The events that occurred during those years were life altering, and their effects are still present within survivors’ lives today, and in the lives of their children, the second generation of survivors. The special needs of children with DD, and the complex set of circumstances Holocaust survivors face as parents in general, present conflicts that may make it especially difficult for these children’s needs to be met in the best possible way.
The literature speaks of difficulties for Holocaust survivors when trying to create and maintain attachment bonds due to the abrupt and final way in which their own attachment bonds were severed with family members (Shoshan, 1989). Disrupted attachment bonds have also led to difficulty with facilitating the separation or individuation process with survivors’ own children (Katz and Kelman, 1981). Circumstances during the Holocaust did not allow survivors to mourn their multiple losses. Inability to mourn may have led to an inability to express emotion even many years later (Brodsky-Cohen, 1991; Moses, 1990), and therefore dealing with the grief and mourning process that accompanies the birth of a child with DD may also be complicated. Making meaning out of surviving the Holocaust presents complexities in the way survivors understand their worlds. Since such a small population of Jews were able to bear witness to the unbelievable atrocities that were suffered, the meaning of having children and continuing the Jewish race as a productive, valuable and successful people is significant. Children are survivors’ link to the past, and reason for the present. Their lives are more than just their own, as they live for all the lives that perished (Zilberfein, 1996). Finally, the mistrust of professionals (Rosenbloom, 1995), the loss of family and friends as resources (Brodsky-Cohen, 1991) and the continuous use of coping mechanisms that became maladaptive after liberation (German, 1992) all prompt issues that require consideration when understanding the available support systems for Holocaust families.
There is no known research on the experience of Holocaust survivors with developmentally delayed children to date. Due to the advanced age of most survivors today, it is research with naturally produced timelines. Because of the need to continue the legacy of the Holocaust, the message it sends to the world about the capabilities of the human race, and most importantly its continued effects on subsequent generations, it is crucial to listen and record the stories from the few who are left.
LITERATURE REVIEW
The literature on children with developmental delays, and their family context is vast. Literature reflects the time frame in which it was written, evolving along side societal attitudes toward people with developmental delays. For example, it wasn’t until the second half of the 20th century that keeping a child with a developmental delay at home was considered. Also at this time, new psychosocial theories emerged which recognized the potential for people with developmental delays to live progressive lives, with proper interventions and living environments (Sloskin, 1980).
Caring for a child with DD at home raises multiple issues for the family as a functioning system. Sewell Wright, Granger and Sameroff (1990) have incorporated emotional resources, cognitive perspectives and social supports as three parts of a developmental model, created to explain parental competence required for a supportive family environment in which to raise a child with a developmental delay. The model is useful for this research in that these three broad themes can also be adopted to provide a framework for the issues present in the lives of Holocaust survivors that may interfere with their ability to develop the supportive characteristics needed to raise a child with DD. These broad categories allow for a recognition of the complexity and multiplicity of factors that interplay to give meaning to a family’s experience with a child who has a developmental delay.
1. EMOTIONAL RESOURCES
Sewell Wright, Granger and Sameroff (1990) discuss emotional resources as “...the ability for parents to mobilize their energy as an important contributor to child outcomes. Anxiety, lack of self-esteem, lack of belief in their own effectiveness as parents all contribute negatively to the ability of parents to raise a competent child”(Sewell Wright, Granger and Sameroff, 1990, p.84). In adopting this model for the purposes of specific research with developmentally delayed children of Holocaust survivors, the category of “emotional resources” has been expanded into three sub-categories: the attachment process, loss and mourning and emotional well-being.
A. The Attachment Process
When a child is diagnosed with a developmental delay, parents’ initial mental picture of life with that child can become equated with feelings of loss (Ellis, 1989). The presence of a delay may create a discrepancy between the realistic and the idealized version of the baby that anxious parents and family members were anticipating. One of the first parental tasks is to resolve this discrepancy so that the process of parent/child attachment can begin (Bristor, 1984; Moses, 1977).
Using premises from attachment theory, the need for a secure bond between a parent and child is understood as a survival mechanism for that child. Attachment, and the need to feel close, serves basic security functions for children, as well as providing comfort, support and a secure base from which to explore the external world (Bowlby, 1988). With this process delayed, accepting the child into family life and nurturing that child may also be delayed. Abnormal responses to parents, such as negative reaction to being handled, unpleasant crying, atypical activity level, delayed smiling, feeding difficulties, prolonged hospitalization and separation, and the presence of medical equipment complicate the task of bonding further (Leff and Walizer, 1992). Phillippe and Floyd (1993), compared parental interactions among children with and without developmental delays, and found parents with handicapped children were less playful and more controlling. The absence of a positive parent-child bond results in less positive exchanges between parent and child, which according to attachment theory can have lasting implications for the ability to create secure bonds in other areas of life, as a child and into adulthood.
B. Loss and Mourning
The second sub-category under emotional resources is loss and mourning. Turnbull and Turnbull (1987) describe the diagnosis of a child with a developmental delay as a symbolic death for parents, where they must grieve the loss of their “perfect child”. Working through the feelings of loss, and the acceptance of a non-perfect child occurs through a mourning process, the external expression of pain and grief shared with others in a supportive environment (ARCH, 1993). Drotar et al. (1975) suggest that most parents will go through some type of mourning process regardless of the severity of the delay, although stage progression or length of stages will vary individually.
Studies of parental mourning indicated the mourning process typically included shock, denial, anger, bargaining, depression, submission and reinvestment (Jackson, 1992). Moses (1992) describes mourning as a primarily emotional process which involves different feeling states such as denial, anxiety, guilt, loneliness, fatigue, helplessness, numbness and shock. It is important to recognize that in the face of this crisis, parents can emerge from the mourning process with a heightened appreciation for life and hope, as basic beliefs about life and fairness have been challenged (Kelley and Kelley, 1993; Stepanek, 1995).
C. Emotional well-being
Feelings such as anxiety, fear, guilt and frustration may arise once parents work through the mourning process and accept the developmental delay as a permanent part of their life and their child’s life. Thus, parents’ emotional well-being plays an important role in handling negative emotions, when the increase in everyday stressors can easily lead to a lowering of individual morale and an increased sense of vulnerability (Wikler, 1986).
Stressors of parenting a child with a developmental delay are multiple and ongoing. Repeated disruption of patterned events such as work (Beckman, 1991), sleep (Konstantareas and Hornatidis, 1992) and daily routines (Pahl and Quine, 1987) to evidence of economic stress (Moroney, 1986), social isolation and some higher incidence of divorce among parents (Cole, 1986; Livingston and Brooks, 1988) have been found in families that care for children with DD. Mothers who were found to be depressed and externally oriented reported a low quality of family relationships (Friedrich, Cohen and Wilturner, 1987).
However, there is a body of research that has failed to find an increase in stressors for families with a developmentally delayed child and no difference in parental emotional well-being (Houser and Seligman, 1991; Orr, Cameron and Day, 1991; Van Riper, Ryff and Pridham, 1992;). Therefore, rather than asking what causes stress in families with a developmentally delayed child, it may be more telling to focus on why some families experience stress and others do not (Stoneman, 1996).
D. The Survivor Experience:
Survivors can experience all of the above mentioned themes, yet their experiences can be complicated because of the effects of the Holocaust on their lives. Attachment plays a major role in the lives of survivors due to the difficulty many have with the process of separation. In her indepth interviews with dozens of Holocaust survivors, Tamar Shoshan (1989) found that almost without exception, the deepest and most disturbing aspect of survivors’ trauma is connected with the moments of total separation from family members. “...the moments of sudden and final separation are forever imprinted in their souls”(Shoshan, 1989, p.193).
When it comes to helping their children achieve a sense of autonomy, survivors can be overwhelmed with feeling that autonomy equals another final separation from a loved one. For non-delayed children of Holocaust survivors, anticipating a separation from the family-of-origin is accompanied by guilt, fear, and a sense of inflicting more suffering upon the parent. Children of survivors often receive unspoken messages regarding their responsibility to make up for their parents’ trauma, including decreasing parents’ anxiety by delaying or ceasing the individuation process (Katz and Keleman, 1981). One author and survivor mentions this:
“...We have not a memory of how it was for us to be a young adult attempting to separate from his or her parents. The issue of separation therefore is especially difficult, not only because to many of us our children are everything we have, but also because our separation was abrupt and never truly resolved...How can one emancipate from a dead parent? Like these parents, most of us lack the first hand experience that other people have to draw from. This dilemma plagues many of us and it is, I believe, one of the greatest difficulties in the relationship with our children (Frankle, 1978, p.241).
For survivors with developmentally delayed children, the issues surrounding separation are heightened even that much more. A social worker at Reena Foundation (a Jewish organization serving adult children with developmental delays) describes the difficulty in suggesting out of home placements to Holocaust families with children who have the potential to lead more autonomous lives. Separation is seen as something to protect the family from, rather than a way of promoting a child’s growth and sense of independence. A non-delayed child may be able to struggle and reject these demands, yet a child who is developmentally delayed is often too dependent to contemplate the positive or negative effects of his/her parents’ rationalizations. Yet, problems arise when the parents grow frail, and there has not been any future planning done to ensure the continuation of the child’s care.
The process of mourning is critical to understanding the internal psyche of the survivor, and thus the way in which survivors relate to their children. For Holocaust survivors who have children with developmental delays, the process of loss and mourning that most parents experience is complicated by their past experiences with the grief of losing so many family members. For some survivors, the inability to mourn for lost family and friends during the war limited their ability to express emotion and pain. Subsequently, Brodsky-Cohen (1991) points out that successful grieving may never be possible due to a survivor’s inability to get in touch with his/her own emotions. After such a “deadening” of emotion, a survivor may in fact fear his/her own emotions and avoid them as a means of avoiding psychic depletion (Krystal, 1981). Moses (1990) has suggested that successful completion of the mourning process by survivors, and thus some sense of coming to terms with Holocaust trauma is avoided, because being anything less than full of rage and anger would signify a betrayal of the dead, and another victory for Hitler.
Due to the inability to mourn, survivors may have an especially difficult time getting over the diagnosis of a developmentally delayed child. Remaining at the stages of initial shock and denial for an extended period of time complicates the process of adjusting to the inevitable changes, seeking out supports and acquiring the knowledge needed to care for a child with DD. Making meaning of the situation through a sense of hope and appreciation for life as mentioned earlier (Stepanek, 1995) may not be possible for Holocaust survivors, as their commitment to hope and the continuation of life has been so tragically tested one too many times.
2. COGNITIVE PERSPECTIVES
“A disability, whether mental or physical is of itself not a psychological event. Its impact on a family or individual is determined by its meaning within an ecological context” (Fewell, 1990, p.205). Cognitive perceptions of an event are viewed as inseparable from the actual event itself. Therefore, the perceived meaning parents assign to their experience of having a child with a developmental delay would be the necessary starting point in understanding each parent’s experience of life with his/her child. Meaning can be explained as a result of the combination of societal definitions assigned to the developmental delay and individual meaning determined by cognition and personality characteristics.
A. Impact of Societal Definitions
Within an historical context, societal definitions of people with developmental delays have progressed. However, people with DD are still socially evaluated as individuals who are “not normal” and are less valuable as functioning societal members. Western culture puts an especially high value on status quo appearances and behaviors, and anyone who deviates from that norm is stigmatized and discounted (Fewell, 1990). A good example is Roskies’ study of thalidomide-deformed babies. Roskies found that mothers’ attitudes toward their babies were equally dependent “not only on her own feelings... but on the social prognosis” (Roskies, 1972, p.169). Further, a mother’s optimism increased as her perception of the social acceptance that her child achieved increased.
Societal meaning of individuals with developmental delays can cause some degree of role conflict between parents and society or community members. Parents are expected to be unconditionally devoted to the best interest of their child, while remaining functioning members of a society, within a culture that generally devalues the inherent worth of that child. Parents may have to reconcile internalized negative beliefs about people with developmental delays that have gone unchallenged, until the experience of having a child with a developmental delay.
B. Individual Personality Factors
Individual cognition also determines how one will make meaning of one’s own situation. Literature shows some clear characteristics in people who seem to cope with life crises better than others. For example, the concept of hardiness is defined as a personality attribute that protects individuals against stress. One with a “hardy personality” is challenged by change, feels able to control life stressors, and finds meaning in stressful situations (Maddi and Kobasa, 1984). Gill and Harris (1991) found a strong positive correlation between hardiness and social support, and found women with hardy personalities to have the least amount of depressive symptomatology. Finally, high amounts of family hardiness can act as a buffer to reduce negative stress and facilitate adaptation to difficult circumstances (Failla and Jones, 1991).
The concept of mastery is another aspect of individual cognition that has been used more extensively in the literature. Mastery refers to one’s sense of individual control over one’s own situation. Mastery has also been referred to as a sense of coherence (Antonovsky, 1987), an internal locus of control (Summers et al., 1989), or self-efficacy (Harris and McHale, 1989). Regardless of the specific term, these authors have found that individuals who can cognitively make meaning out of difficult life-challenges, as well as actively accept responsibility for their situation rather than assign blame to external sources, can reduce stress and cope more effectively with a child with DD.
C. The Holocaust Survivor’s Experience
Making meaning out of the experience of having a child with a developmental delay is influenced by the meaning a survivor makes of his/her Holocaust experience. Meaning may derive from a combination of societal messages, and survivors’ individual cognitions.
Mechanisms of denial and repression that were so often used as survival techniques during the war were reinforced by the larger society after liberation, through the lack of attention given to the psychological effects of the Holocaust on survivors (Bergmann and Jucovy, 1982). Professionals lacked the knowledge base and experience to deal with such traumas in clinical practice. This precipitated the use of denial as an available coping mechanism for the effects of emotional trauma. In general, society was ill-equipped and perhaps too frightened to acknowledge that humans were capable of such evil, and Holocaust survivors were left with little or no effective assistance in coming to terms with their experiences.
In terms of survivors’ individual cognition, the meaning of “surviving” the Holocaust extends far beyond escaping the will of the Nazi regime. It has been noted that for many prisoners in concentration camps, the fear of personal death was not as great as the fear that no one would survive to bear witness to the world about what actually occurred during the Holocaust (Levi, 1958). The notion of bearing witness is strongly linked to the notion of surviving, and remains a primary obligation for many survivors. Having children was one way to continue the memory of lost family. Children born after the war represent a victory over Hitler, a symbol that his attempt to annihilate the Jewish race never did materialize.
In having a life embedded with such symbolic meaning, children of Holocaust-survivors may be burdened with unrealistic expectations. Children of survivors represent a link between the survivor’s present and past life. To be worthy of this special position, children need to be perfect, because anything less would cast doubt on the validity of Jewish worth, and the Jewish right to procreate (Bergmann and Jucovy, 1982, p.57). Children were outlets through which parents were able to re-experience lost siblings, parents or even other children. Often named after the dead, they bear the responsibility of continuing a legacy of someone that they had never known, and often in their parents’ eyes, could never equal.
Not only do children of survivors represent the continuation of the memory of lost relatives, they often feel burdened with the responsibility of living their lives for their parents, to make up for the suffering caused by the Holocaust (Zilberfein, 1996). In some cases, children are an opportunity for survivors to focus on developmental stages in their lives that were halted or never nurtured. One survivor-child stated ”...there is a specialness to being the child of survivors...”
They (the parents) lived through their daughters being things that they didn’t have a chance to be. I felt I needed to be good, to make up for their suffering.” (Katz and Keleman, 1981, p.260). Based on the research with non-delayed children of survivor parents, we know the pressure under which they grow and develop can be immense. How would parents deal with a delayed child, and his/her limited cognitive abilities, considering the highly symbolic and representative status attributed to the perfection and meaning of children? In addition, what meaning would the birth of a child with a developmental delay be given, considering the legacy of lost family and community that survivors feel they need to continue. It may be extremely difficult and retraumatizing for Holocaust survivors to reconcile the birth of a child who cannot fulfill their expectations, and the expectations that come with carrying a history so loaded with unresolved grief.
3. SOCIAL SUPPORTS
From the moment a child is diagnosed with a developmental delay, parents and families become involved in a potentially constant search for various sources of support. Support works to combat isolation, control life stressors, and manage the difficult and ominous challenges ahead. Social support includes informal involvement from family and friends, and more formal involvement from a vast and sometimes intimidating network of professional systems. Both types will be discussed here.
A. The Parent-Professional Relationship
A good relationship between professionals and parents is crucial for effective intervention with families of children with developmental delays (Friend and Cook, 1996). Where relationships are perceived to be strong, research has found that use of professionals facilitated adaptation, and benefited families with a handicapped member greatly (Brinker, Seifer and Sameroff, 1994).
In a general discussion, Lyon and Lyon (1991) mention that the parent-professional relationship is an important factor in ensuring that an intervention strategy is consistent and enforced, and for professionals to understand and empathize with families’ unique needs. An analysis of variables that affect the collaborative relationship between parents and service co-ordinators found five themes to be significant: dispositions and personal characteristics; philosophical beliefs and values; ways of working together; knowledge base; and outside influences (Dinnebeil and Hale, 1996). With the shift towards family-centered services in the 1980’s that included an increased emphasis on the parent-professional relationship, these themes are important considerations in the delivery of quality professional support. Professionals now seek to relinquish the role of “expert” and join with the family as a team member, making joint decisions that reflect the entire families’ needs (Leviton, Mueller and Kauffman, 1992; Rower and Kilgo, 1991).
However, there is not consistent evidence of the positive effective of professional support for families. Complaints from families include the professional tendency to medicalize family problems which may lead to blaming the victim, frustration with bureaucracy that inhibit access to resources (Darling, 1993) professionals’ lack of accurate or appropriate information and use of unexamined stereotypes (Leff and Walizer, 1992). Still, it is crucial to continue examining the dynamics of the parent-professional relationship, as it remains one key pillar in building a strong network of social support.
B. Informal Social Networks
Just as there is reason to believe that social networks act as a buffer against the strains of parenting a child with a developmental delay, there is also reason to believe that parents with DD children are at greater risk for social isolation (Cant, 1992). Children with DD, and their families may feel isolated from the wider community for a variety of reasons. The stigmas and stereotypes associated with developmentally delayed people remain. Parents experience stares and shocking reactions from strangers in malls or on the street to be isolating and worrisome (Singer and Irvin,1989). The highly demanding and time consuming nature of caregiving can also isolate parents from peer groups (Erickson and Upshur, 1989). Often, inability to find respite or alternative childcare create so much fatigue, that leisure time is impossible.
Studies that report positive adjustment of parents of children with developmental delays usually attribute a strong informal support network as a key factor. Trute and Hauch (1988) found families could turn to their networks for emotional support, physical aid and everyday advice and commentary. Also, effective building and use of social support networks can offset frustration, and decrease the need for so many community resources (Dunst et al., 1986). As parents receive feedback and acknowledgement from people outside of the immediate family unit, an enhanced sense of competence and mastery over the challenges of parenting a child with a developmental delay results (Jones, 1991).
C. Holocaust Survivors and the Use of Support Systems T
he literature suggests that support systems, both professional (formal) and informal, of Holocaust survivors who have had children with developmental delays may be complicated in three predominant ways: the mistrust of professionals (Rosenbloom, 1995); the loss of family and friends as resources (Brodsky-Cohen, 1991); and the continuous use of coping mechanisms that became maladaptive after liberation (German, 1992).
Engaging survivors in the professional social service network has to be considered with heightened sensitivity. The Holocaust taught survivors about the deadly risks of conforming to the majority, and the dangerous misuse of advanced technology and professional skill (Rosenbloom, 1995). The eagerness with which professionals expect families to seek instruction, may not be the case for Holocaust families. To survivors, the best professionals in the field are equated with the legal experts who wrote racial laws, the engineers who built the crematoriums and the doctors who performed human experiments on Jews (President’s Commission on the Holocaust, 1979).
One author and child of survivors recalls a childhood experience: “When my father harangued parking attendants, waiters and doormen, I understood that he hated being told what to do by men in uniform” (Epstein, 1976, p. 22). The sensitivity with which survivors may respond to professional terminology such as “treatments” and “tests” and “special observations” is also an issue. These types of words conjure up “unspoken genocidal meanings” rather than competent care for one’s child (Seltzer (1975) as discussed in Rosenbloom, 1995).
The stark reality for Holocaust survivors, is that they often were liberated as the sole survivor of an entire family, or even an entire town (Brodsky-Cohen, 1991). Therefore, the support systems made up of family and friends that enable successful coping with developmentally delayed children may not exist. Mistrust of the outside world, especially the gentile world (Katz and Keleman, 1981), make it difficult to form new bonds and friendships with others. Instead, many Holocaust survivors have struggled to surrounded themselves with other survivors, whom they felt could understand them and reminisce with them about pre-war families, and life in Europe. Epstein (1976) writes about growing up in this type of closed off community: “..the adults who came to our house were “different” it was a close, sealed off society, peopled with eccentrics my parents ascribed to the war (p.22, 1976).” Within this “sealed off society”, survivors did not have to be concerned about avoiding attention, or being singled out.
Avoidance of being singled out was a coping strategy to ensure survival during the war, as any attention by an S.S. guard made one the next target for death. Denial and repression of experiences was one way of avoiding attention, in order to block the memories and preoccupation of what actually happened to survivors and their family members (Brodsky- Cohen, 1991). Dealing with the questions and stares that parents of children with developmental delays spoke of in public as being so isolating and worrisome could be retraumatizing for Holocaust survivors, and provoke anxieties about being labelled and maybe even becoming the target for persecution once again.
CONCLUSION
It is important to mention that the categorization of Holocaust survivors recognizes involvement in a particular historical event as the salient defining characteristic of people who have had unique pasts and individual lives. This research does not suggest that all survivors would deal with the experience of having a child with a developmental delay in the same way. Nor does it suggest that all survivors are incapable of expressing emotion, feeling pain or integrating within their societies. In fact, many survivors have led fascinating, enriching lives, surrounding by many family and friends. They have also raised children with a great capacity for empathy, and a sense of responsibility for others. However, the issues raised in this paper are real issues for Holocaust survivors.
Though some may cope better than others due to a variety of individual and external circumstances, many carry what one survivor called “another face” with them throughout their lives. The experience of having a child diagnosed with a developmental delay would raise difficulties for any family, however many themes in the lives of Holocaust families could cause a resurfacing of “the other face” that both professionals and families would greatly benefit from being aware of.
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