Keywords

Grandparenthood can be a very meaningful experience as it often offers a sense of immortality, a sense of continuity, and serves to compensate for past disappointments. Grandparents often perceive themselves as the torchbearers of the past and family legacy, history, rituals and customs. Grandchildren represent a link in the generational chain, and grandparents often see them as symbols of the future—those who will perpetuate their family line (Drew et al. 1998; Neugarten and Weinstein 1964). As such, the relationship between grandparents and grandchildren often carries with it an aura of exclusivity. Oftentimes, the grandparents’ home is the place where three generations unite: grandparents, their children, and their grandchildren. A grandchild’s progress and success can often be a source of pride and satisfaction for grandparents who see these accomplishments as confirmation of their success as parents, and as the ‘dividend’ they have earned from their investment in their children (Kivnick 1982; Neugarten and Weinstein 1964; Nybo et al. 1998).

The meaning associated with grandparenthood can create a set of expectations around the birth of a grandchild. These expectations may be challenged when a grandchild is born with a disability (Berns 1980; Seligman 1991). In general, the birth of a child with a disability often results in crises and challenges, which have lifelong implications on multiple aspects of family life (Bernier 1990; Wikler et al. 1981). Consequences include increased emotional, social, and financial pressures, alterations in family functioning, impairment of psychological well-being, and/or chronic distress (Florian and Findler 2001; Kazak and Christakis 1994; McCubbin and Patterson 1983; Wallander et al. 1990). These implications, and the need to cope with them, are not felt solely by the parents, but by other members of the nuclear and extended family as well, including the grandparents. As grandparents are often an essential part of a family’s social support system, they are likely to experience the effects acutely. The birth of a grandchild with a disability often results in twofold distress for the grandparents who suffer the pain of the child and even more so, the pain of its parents, their own adult children (Anderson 2010a; Burns and Madian 1992; George 1988; Hall 2004; Seligman 1991; Woodbridge et al. 2009).

Despite the important position of grandparents in the family, and the recognition that raising children with disabilities impacts other family members, there is a paucity of research on the effects of a child with a disability on intergenerational relations (Seligman 1991; Vadasy 1987).

A review of the literature on families in crisis and family development reveals that for decades, grandparents have been marginal or negligible in discussions of families of a child with a disability. The sparse literature that exists regarding grandparents in such families focuses on the assistance and support they provide to their children and grandchildren, and not on the grandparents themselves (e.g. Findler 2000; Green 2001; Mirfin-Veitch et al. 1996, 1997; Mitchell 2008; Trute 2003). The personal experience of grandparents has yet to receive the research or clinical attention it deserves.

This chapter provides a review of the literature on grandparents of a child with a disability, and sheds light on the unique positions, experiences, and perspectives of these hidden family stakeholders. A comprehensive innovative study of grandparents’ voices and experiences is included in this review (Findler 2009).

3.1 Contending the Diagnosis

It is documented in the literature that when a child is diagnosed with a disability parents often mourn the loss of their dream for a ‘perfect’ child, and are forced to cope with the consequent narcissistic injury (e.g., Hugger 2009; Riesz 2004; Whittingham et al. 2013). Grandparents often contend a similar experience; when a grandchild is diagnosed with a disability, grandparents are often caught unprepared, and are thus left feeling stunned and hurt. The diagnosis is often the starting pistol of an exhausting and emotional rollercoaster (Woodbridge et al. 2009). As described by a Grandfather of a child with a disability:

I’ve gone through a lot of hardship in my life even before this; it’s not the first time I’ve been hurt. But when it comes to my granddaughter it’s entirely different… it cuts you like an ax and there’s no mental preparation for that… everything changes…

When a child is diagnosed with a disability or illness, parents are often forced to be actively preoccupied with the many demands associated with the disability: physical care of the child, intensive meetings with doctors and other professionals, and adapting the home environment to the child’s physical, cognitive, and emotional needs. Grandparents often undergo a mourning process similar to that of the parents, although from a more removed place (which may actually prolong the mourning period). Grandparents’ distance from the day-to-day practical implications of dealing with the disability often leaves them only with a sense of loss. Furthermore, grandparents do not have access to the emotional and professional support and legitimacy offered to the parents, and often lack information regarding the nature of the disability and its short- and long-term ramifications (Anderson 2010b; Burns and Madian 1992; George 1988; Lee and Gardner 2010; Margetts et al. 2006). For example, in a study conducted by Katz and Kessel (2002), grandparents of a child with a disability expressed the feeling that the parents did not provide them with enough information about the child’s diagnosis, or freedom to be involved in the child’s daily routine. On the other hand, in another study, grandmothers reported that once they received specific information, they were able to better meet the needs of their grandchildren with disabilities (Gallagher et al. 2010).

A US study that examined the reaction of 32 grandparents to their grandchild’s diagnosis of disability (Scherman et al. 1995) illustrated the total unpreparedness grandparents experienced and the way in which it made facing and accepting the reality more difficult. Specifically, although informed of the presence of the disability immediately after the birth, these grandparents were not given detailed information about the child’s condition. Participants reported experiencing a sense of shock, loss, anger, denial, disgust, and uncertainty which were exacerbated by a lack of information and support.

As noted earlier, the pain the grandparents contend is two—or even three-fold: pain for themselves, pain for their children, and pain for their grandchild (Moules et al. 2012). The birth of such a child not only changes grandparents’ daily routine and expectations, it may also shatter their fantasy of the future of their family. The pain grandparents feel for themselves is often related to narcissistic injury, disappointment, and even shame (Vadasy 1987).

A study by Findler (2009) examining the experience of grandparents of children with intellectual disabilities revealed that the initial diagnosis of disability aroused extremely strong and painful emotions which remained carved in their memories; at the time of the interviews which was years after the diagnosis, participants described the diagnosis and the feelings it aroused in vivid detail. Some participants acknowledged that their initial reaction was hope to spare their own adult children the difficulty of raising a child with a disability. To quote one grandmother:

From my point of view, it was a catastrophe that I couldn’t simply accept… As I saw it, she [the mother] had lost her life. If he lived, she wouldn’t live, or she’d have a very bad life.

In some cases, the diagnosis of disability is given at birth or soon after. In other cases, the diagnostic process may be lengthy, prolonging the ability to cope with it. Even in circumstances in which the diagnostic processes was lengthy, several grandparents revealed uncertainty and a lack of understanding; they stated that they were aware that a problem had been discovered but were unable to provide details about the condition and its implications (Findler 2009).

On the other hand, some grandparents credited themselves for being active in, and even initiating, the diagnostic process. According to Anderson’s report (2010a) many grandparents played a vital role in early recognition of their grandchild’s ASD. Not only did nearly half the grandparents say they had provided support to a parent who was raising concerns, but also 30 % reported they were the first to notice a problem with their grandchild’s development.

However, these grandparents, the ones who identified the presence of an issue before the parents realized, faced the additional dilemma of whether or not to broach the subject with their child, their grandchild’s parent. Because of the sensitivity of the subject, and concern about the pain they would likely cause, grandparents expressed anxiety about the angry reaction that would be invoked by raising the issue. For example, one grandmother of a child with a disability discussed how she noticed impairments in her grandchild’s development:

I knew right away that there was a problem…from experience. She didn’t look at me, didn’t make eye contact. She had the symptoms of autism…Right away I knew there would be a problem, I was sure of it. When I said so…she [the mother] got angry. She said, ‘She is still very little, what do you want? You can’t tell’. But I knew. I wasn’t surprised by anything. They were all blind.

Studies show that the majority of grandparents of a child with a disability are actively involved in the diagnostic process from the beginning (Anderson 2010b; Gallagher et al. 2010). However, the extent and nature of involvement vary; although some grandparents find it difficult to be supportive for their children as they are dealing with their own profound sorrow (Seligman 1991), most feel that at this difficult junction it is their duty to repress their own pain and feelings of distress and anxiety, in order to provide support for their children (Miller et al. 2012). Furthermore, grandparents were often involved in decisions for their grandchildren. In Anderson’s report (2010b), more than 70 % said they had played some part in treatment decisions made for their grandchild, with 22 % saying they were very involved, or had even taken the lead on decisions regarding treatments.

3.2 Emotional Processing

Accompanying their children through the process of the diagnosis often arouses existential questions and uncertainties regarding injustice and fate among grandparents. Grandparents try to make meaning of the experience and to understand ‘why’ this had happened to them and to their family (Woodbridge et al. 2011). Moreover, grandparents’ pain is often accompanied by fear and anxiety that their children will be too busy addressing the needs of the child and thus, will be unable to care for them in their old age (Findler 2009). These feelings are not socially legitimate and thus are not easily expressed.

In addition to the pain they feel for themselves, grandparents suffer emotionally for their children as well, as it can be particularly difficult to witness their children coping with such a challenging situation. In the words of a grandmother talking about her daughter and grandchild:

I was fighting for her life and she was fighting for his life. That’s how it was. I was just fighting for her life. I said to myself that she didn’t know what was waiting for her, that her married life, her romance, her joy in life, was over.

The third pain grandparents experience is the emotional pain they feel for their grandchild. It is difficult for them to witness the pain their grandchild experiences, and imagine the pain the child will contend in the future. Grandparents are often concerned about the possibility that their grandchild with a disability, a child who is socially vulnerable, will be abused or injured (Findler 2009). The comparison with other children of a similar age is painful for grandparents at each stage in the child’s development; each milestone in the child’s life provides further evidence of the lost potential. In many cases, grandparents are distressed less by the actual disability and difficulties the child will face and more by what he or she will miss out and never get to know or achieve (Woodbridge et al. 2011). Additionally, while in typical circumstances, grandparents often anticipate a time when their grandchildren will be grown and independent, imagining the support and family continuity such a transition would provide, grandparents of a child with a disability don’t have that luxury, and often fear for the child’s fate once the child’s parents grow old (Scherman et al. 1995).

3.3 Between Denial and Acceptance—Reactions to Child’s Disability

In her study, Findler (2009) found a large extent of heterogeneity in the manner in which grandparents described their grandchild’s disability. Some grandparents related primarily to the official diagnosis and its symptoms, others refrained from using the formal diagnosis, and instead depicted the specific problems (i.e. difficulties in school or motor impairments). For example, a grandfather of a child with a disability stated:

He doesn’t talk, and he doesn’t hear very well either. He can’t move one leg. He’s fed through a tube. He’s got a lot of problems.

Some grandparents are able to see beyond the disability and choose instead to focus on positive aspects of their grandchild without letting the disability overwrite their view of the child. These grandparents note developmental improvements or stress the uniqueness of the child despite the disability. In some cases, grandparents minimize the severity of the disability by emphasizing the love they have for the child and the special relationship they have with him or her. These grandparents often voice optimism concerning the future (Katz and Kessel 2002). However, this minimization, optimism, and positive outlook often mask denial; grandparents often attempt to normalize or minimize the child’s difference instead of facing and/or embracing his/her disability. As a grandmother of a child with a disability described her grandson:

He’s fine. It’s just that other kids have a bad influence on him. He doesn’t look odd or different, Heaven forbid.

This denial can be so great that these grandparents turn a blind eye to reality to the extent that they create fantasies about imaginary medications, paint an unrealistic picture of the disability, and/or adopt exaggerated optimism (Seligman 1991; Seligman et al. 1997).

Grandparents’ difficulty in accepting a grandchild’s disability and dealing with the consequent pain and disappointment may cause them to perceive the situation in an unrealistic light, seek explanations or justifications, or to deny the disability entirely. However, over time, most grandparents come to terms with the diagnosis and learn to cope in their own ways. Initial feelings of sadness, helplessness and anxiety give way to more positive feelings of acceptance, hopefulness and involvement (Schilmoeller and Baranowski 1998). According Anderson (2010a), grandparents occasionally felt they had, at some point, been in denial about their grandchild’s ASD. Some of them on the other hand, felt their adult child, the grandchild’s parent, had been in denial at some point, and even more indicated that their child’s spouse had been in that state. Interestingly, grandparents were more likely to view sons or sons-in-law as having been in denial than daughters or daughters-in-law. Similarly, some of them reported their grandchild’s other grandparents had had trouble accepting the child’s diagnosis.

3.4 Adapting to the Unique Circumstances

Once a concrete diagnosis of a disability has been made, grandparents are confronted with the challenge of coping with the new reality and its implications on their families and their own lives. Schilmoeller and Baranowski (1998) studied grandparents of a child with cerebral palsy at the time of diagnosis and at a subsequent interval. They found that the negative emotions that grandparents experienced when they learned of the disability (i.e. anger, confusion, helplessness, and betrayal) were moderated over time. Specifically, further down the road (after the diagnosis), the negative emotions were replaced by more positive ones such as a sense of calm, hope, strength, vitality, and acceptance; the more the grandparents adapted to the new reality, the stronger these feelings grew. Similarly, a study by Findler (2009) found that grandparents of a child with a disability reported positive emotions and unconditional love for the grandchild:

My granddaughter… if they told me now to do the craziest thing on earth to give her comfort, joy, or pleasure, I’d do it. I’m not talking about her health, which I’d give parts of my own body for. It’s unconditional love. There are no conditions to this love.

Nonetheless, these positive feelings were often mixed with pain, concern, and sorrow. Gradual acceptance of the new reality of disability is a journey, one that begins with existential quandaries and continues with the reexamination and reframing of expectations of grandparenthood. This journey involves searching for and finding a meaningful answer to the question of “why us?” As grandparents reflect on the expectation of “ideal grandparenthood” and compare it with their own experience, they derive new insights and modify their expectations and definitions. Through this process they cast aside previous fantasies about the activities and interactions they expected to enjoy with their grandchild, replacing them with revised plans and expectations (Katz and Kessel 2002; Woodbridge et al. 2011).

3.5 Grandparenting a Child with a Disability: Navigating Styles, Roles and Meaning

The role of a grandparent of a child with a disability may take on a variety of forms and include the provision of instrumental, financial, and/or emotional assistance (Hillman 2007; Katz and Kessel 2002; Schilmoeller and Baranowski 1998). Woodbridge et al.’s study (2011) on 22 Australian grandparents of a child with a disability examined the classic typology of Neugarten and Weinsten (1964). Their findings indicate that participants adopted three out of the five grandparenting styles: “surrogate parent”, “fun-seeking”, and “reservoir of family wisdom”. Most of these grandparents did not adopt the “formal” or “distant” grandparenting styles. Those who adapted a ‘surrogate parenting’ style felt that they were called upon to enhance the welfare and functioning of the nuclear family. They accompanied the parents to medical appointments and treatments, looked after their grandchildren for several hours or even days, and performed numerous other instrumental tasks. The role of ‘reservoir of family wisdom’ was performed by contributing to the grandchildren’s knowledge and by teaching them and instilling cultural and traditional values (Woodbridge et al. 2011, p. 360). According to Woodbridge et al. (2011) grandparents often saw their role as a conduit to other members of the family, both past and present, fulfilling an educational “kinkeeping” activity, role and style. Grandparents described the importance of maintaining wider family bonds, recalling how they would take their grandchildren to visit family, to the country and to go camping. Unfortunately, maintaining these family bonds was sometimes challenging, as wider family members struggled to cope with and accept the reality of disability.

The primary contribution of grandparents of a child with a disability is the instrumental and emotional support they provide (Hillman 2007). Although these types of support are features of ‘grandparenting in general,’ in the case of a child with a disability, they become more crucial and take on special meaning (Findler 2009). Whereas some of the activities these grandparents perform relate specifically to the child with a disability, others are more general and are meant to ease the burden on the parents to enable them the freedom to spend time with their spouse and other children or advance their careers (Scherman et al. 1995).

Instrumental support includes babysitting, chauffeuring, trips and outings, imparting knowledge, and assisting with homework (Gardner et al. 1994; Schilmoeller and Baranowski 1998). The importance of grandparents’ instrumental support lies in providing a support system for concrete needs including medical care that requires an understanding of the complexity of the disability and the demands and treatment it entails. Indeed, after the shock of the initial diagnosis, some grandparents learn and display an impressive command of medical terminology, the physical implications of the disability, and the most effective treatment and intervention strategies for the child (Gardner et al. 1994). Another form of instrumental support that grandparents frequently provide is financial assistance intended to ameliorate the extended costs of the family (Anderson 2010b).

Emotional support is provided to the grandchild and his/her parents through listening, empathy verbal and physical expressions of unconditional love (hugs and kisses), praise for the grandchild, and playing with the child. Grandparents often express empathy and support for their child’s feelings of sadness, frustration, or disappointment (Findler 2009). The emotional support they provide is significant as it is geared towards providing their adult child with someone to talk to, a sense of shared destiny, and the security to openly and honestly express their pain, frustrations, and disappointments without fear of being judged.

In many cases, grandparents of a child with a disability perceive their role as one that is a critical source of support and requires total commitment to the needs of their children and grandchildren. These grandparents often display a great deal of commitment to helping their adult child and their grandchild, regardless of age and physical limitations (Gardner et al. 1994; Schilmoeller and Baranowski 1998). They often feel that when their children are dealing with such difficult and demanding circumstances it is inappropriate for them to be concerned with their own needs (Findler 2009).

3.6 Personal Costs and Prices

The dedication and commitment of grandparents towards their children and grandchildren often comes at a price. The cost of supporting their family includes setting aside their own dreams, putting off plans to travel or indulge in hobbies, and working fewer hours in order to be closer and provide more help to their children (Woodbridge et al. 2011).

Research indicates that grandparents may also pay a social price. Specifically, Findler (2014) found that perceived social support from friends was lower among grandparents of a child with an intellectual disability in comparison with grandparents of children without a disability. This is consistent with findings about mothers of a child with a disability who report a smaller network of friends and acquaintances in comparison with mothers of children with typical development (Findler 2000). It appears that grandparents who devote themselves to their families find it hard to cultivate social relationships. Grandparents of a child with a disability can feel uncomfortable in the company of their peers, especially when the conversation turns to the development and achievements of their typically developing children and grandchildren. Not surprisingly, grandparents often prefer to avoid such situations. Additionally, unlike close family relationships which generally endure unusual events or circumstances, friendships that are not actively nurtured by both sides tend to fade (Findler 2009).

Grandparents are key figures in families of a child with a disability, and they often take upon themselves the unique role of preserving the family’s quality of life and promoting its happiness (Miller et al. 2012). However, grandparents’ advanced age may pose as a challenge as it often impedes their current functioning and serves as a constant reminder of the time when they will no longer be able to provide the emotional and instrumental support their family requires. In addition, grandparents are often torn between their own needs and those of the other members of the family. Striking a balance can be extremely difficult. As a result of this tension, many grandparents of a child with a disability choose to reject career opportunities and discard plans for retirement, instead preferring to be close to their children and offer them the help they need. It is important to note that grandparents do not always feel that their children are grateful for the significant effort they make (Miller et al. 2012).

The time and energy grandparents invest in the child with a disability may cause their other children and grandchildren to feel neglected. Dividing their resources fairly among all members of the family is proven to be difficult, and grandparents are liable to find themselves at the heart of a conflict saturated with envy and possessiveness (Miller et al. 2012).

Findings of Woodbridge et al. (2011) indicate that grandparents of a child with a disability often regard themselves as mediators within the extended family. As the presence of the child with a disability may adversely affect relations with members of the nuclear and extended family, grandparents often feel it is their duty to arbitrate and prevent the conflicts that may arise. In some cases, the first signs of conflict appear before the birth of the child and become more intense after the birth; in other cases conflict arises in the wake of the new reality. Heightened sensitivity to verbal comments or minor acts often leads to conflict, particularly at family events. Grandparents often feel caught between conflicting expectations—wishing to protect the child with the disability from unseemly reactions of aunts, uncles, or cousins, while at the same time maintaining their own close relations with them. Findler (2009) found that oftentimes at family gatherings grandparents are hurt when witnessing the isolation and ostracism facing their grandchild with a disability. They often feel that it is their responsibility to intervene to ensure the child gets sufficient attention from siblings and cousins. Similarly, Findler (2009) found that grandparents often feel obligated to develop exceptional sensitivity and balance to ensure that they are able to attend to the special needs of the child with a disability without neglecting their other grandchildren.

3.7 A Delicate Balance: Involvement versus Interference

The desire to provide support and be involved in the life of their grandchild often conflicts with grandparents’ fear of interfering. The strong social and cultural mandate regarding the autonomy and independence of adult children (Johnson 1998), alongside the ill-defined status and ambiguous expectations of the grandparenting role in our society (Fischer and Silverman 1982), places grandparents in an internal conflict regarding their level of involvement. This delicate dilemma becomes particularly sensitive in the case of families of children with disabilities (Sullivan et al. 2012). Grandparents often find themselves walking a fine line in respect to their place within the lives of their children and grandchildren. They endeavor to support without being a burden, guide without being intrusive, and provide love and warmth without being cumbersome (Burns and Madian 1992). Even when they are actively involved in their grandchildren’s care, grandparents are often hesitant to express their thoughts and feelings, and are even more reluctant to voice criticism of their children’s parenting (Katz and Kessel 2002).

Recognizing the difference between the roles of grandparent and parent, grandparents typically walk on eggshells and think twice before intervening in the life of their child’s family. Even if they feel that their children are neglecting their grandchildren, grandparents believe that they are not responsible for the child’s upbringing and their role is to take a step back. Grandparents are usually sensitive to the “rules of the game” dictated by the parents, and do their best to abide by them. Should there be an argument between the parents and the children, or between the parents themselves, grandparents generally choose to keep their distance and not take sides (Findler 2009). It is important to note that while these issues are often found amongst all grandparents, with grandparents of a child with a disability, these issues may take on greater significance, sensitivity, and weight.

Findler (2009) points out that grandparents’ restricted involvement is derived from their own recognition that they do not occupy center stage in the child’s life. This belief is reinforced by the messages they receive from their children concerning the limits of their role. In efforts to maintain good relations with their children and be considered as cherished members of the family, many grandparents maintain the boundaries set out for them (Findler 2009).

While some grandparents are aware of the limits of their authority and try to refrain from overstepping boundaries, others believe that the support they provide grants them certain rights and power. Specifically, they feel that their financial and instrumental assistance entitles them to express opinions and make suggestions regarding the upbringing of the grandchild with a disability (Findler 2009).

3.8 Negotiating Differences of Opinion

Grandparents’ often hold different opinion than those of their children. There are a few central issues most likely to arouse grandparents’ criticism amongst them, the way in which their children speak to their grandchildren, inappropriate diet, and lack of clear boundaries set for their grandchildren’s behavior. In families of a child with a disability, the subject of the grandchild’s special needs tends to cause the most conflict; grandparents often feel that the parents of the child with a disability respond inadequately to the child’s needs, are negligent about treatment and/or diagnosis, and are lax in finding and/or trying to search for solutions to the child’s issues (Findler 2009). At a later stage, post diagnosis, grandparents may have reservations about the educational institution in which the grandchild with a disability is placed, often believing it does not suit the child’s level and/or needs. A few grandparents report feeling that the grandchild is not shown enough love by their parents (Findler 2009). The conflict grandparents face between wishing to be involved in their child and grandchild’s lives and the fear of being blamed for interference may intensify as the child develops.

Grandparents cope with these differences in many ways including estrangement, constant criticism, completely backing down, and/or enduring any offense or acrimony in order to avoid damaging the relationship. For the most part, grandparents consider their words carefully and make efforts to choose their battles by setting priorities regarding issues that warrant a comment and issues that do not; attempts are made to choose suitable times to express opinions they do decide to vocalize. Some grandparents, particularly grandmothers, employ open dialogue as a problem-solving and conflict resolution strategy in order to build intergenerational relationships based on open communication, trust, and honesty (Findler 2009).

As discussed above, the moment when grandparents suspect that their grandchild is not developing typically, they are faced with a dilemma: on the one hand, grandparents know how important it is to make parents aware of a possible issue and encourage them to seek help as early as possible. On the other hand, they are often afraid to voice their concerns out of fear that they will cause their children pain and thus, be a target of their anger. Some grandparents feel that they do not have a close enough relationship with their child and thus, they do not have the openness to discuss concerns or interfere in their children’s lives (Findler 2009). As a grandmother of a child with a disability expressed:

I don’t know how they didn’t see it…I saw immediately because of my experience as a mother that she didn’t have the skills of a 13-month-old. None of them. Nothing. I saw it clearly, and all the time I felt they weren’t doing enough to fix the problem. To this day they don’t do enough.

However, grandparents felt that voicing concern, criticism, or offering suggestions regarding the grandchild requires particular sensitivity. Specifically, although grandparents may recognize the importance of informing parents about medical assistance and/or treatment options, they are aware of the difficulty their children face and do not wish to add to their distress by making them feel incompetent or guilty.

The complexity of these circumstances is evident in participants’ comments as a grandmother of a child with a disability stated:

I think that if they left the child with me more, she’d make more progress. There’s no doubt in my mind. I’m not being judgmental. She is their first child, and there’s the matter of possessiveness and exclusivity, and on top of that she is a child with problems. Looking at it from the side, I think that if they let her go a little more, she’d be less dependent on them and she’d develop more…I’m not going to bulldoze them. I know the puzzle, and I work within it. It was harder at the beginning. I worked on myself…just take a minute, be smart, you’ve only got one son, one granddaughter, one daughter-in-law. Work with them.

There are times when grandparents feel a sense of urgency and take the initiative to seek solutions needed to support grandchild’s development. Others attempt to relay the message to their children in an open and reasonable manner, and only if they come up against a brick wall do they feel they have to use force to get their point across. Other grandparents are more sensitive to the complexity of the situation, and thus display acute understanding of the parents’ difficulties, recognizing that their criticism would be unconstructive, unfounded, and insensitive (Findler 2009). Despite these differences, many grandparents are involved and try easing the reality for their children and grandchildren by helping as much as possible. However, this help varies from family to family and from grandparent to grandparent.

3.9 Grandparents’ Involvement and Support: Contributing Factors

There is a variety of factors contributing to the degree to which grandparents are involved in their children’s families. These include interpersonal and familial relations (i.e. the relationship between the grandparents and their children, affectional solidarity); personal traits (i.e. gender and health), and structural factors (i.e. geographical distance).

3.9.1 Interpersonal and Familial Relations

The nature and history of the relationship between the grandparents and their children appear to have the most significant impact on the quality and character of the support grandparents offer their children. This is particularly true in unique circumstances, such as when a child is diagnosed with a disability. According to Mirfin-Veitch et al. (1996, 1997), the quality and components of the intergenerational connection in families of children with disabilities do not stem from the presence or severity of the grandchild’s disability, but rather from the family relations prior to the birth. The authors contend that a history of family intimacy and open communication serve as the foundation for empathy and emotional and instrumental support after the birth of a child with a disability. In contrast, a history of emotional distance and relationships characterized by coldness and closed communication leads to estrangement and a lack of support.

Similarly, Schilmoeller and Baranowski (1998) examined predictors of grandparents support and involvement among seventy grandparents of children with cerebral palsy. The authors found that of all the dimensions of intergenerational solidarity delineated by Bengtson and Mangen (1988) and Bengtson and Roberts (1991) affectional solidarity (i.e. emotional exchanges between adult members of the family, the quality of their relationships, displays of love, affection) predicted the level of support grandparents of children with disabilities offered their offspring. (Schilmoeller and Baranowski 1998). Naturally, in families of children with disabilities, affectional solidarity took on unique significance as the parents might contend isolation and loneliness. However, in some cases, while grandparents felt capable of providing instrumental support, they found it difficult to offer emotional support for fear of interfering in sensitive issues and hurting their children (Schilmoeller and Baranowski 1998).

3.9.2 Gender Differences

Gender differences have been found in the type and level of grandparents’ participation in the lives of their children and grandchildren, as well as the perception of the nature and quality of the intergenerational relationship. Gender can be related to grandparenthood through one of three routes: grandparent’s gender, grandchildren’s gender or maternal/paternal grandparent status. Grandmothers are often more involved in childcare, and as such, have more of a tendency to experience the family more intensely. Indeed, many of the grandmothers in Findler’s (2009) study, identified their role as ‘grandmother’ as their mission in life, viewing themselves as a key figure in their children’s’ families.

In contrast, there are fewer social expectations of men to take on an active role in family life, either instrumentally or emotionally (Bates 2009). However, grandfathers who did not spend much time raising their own children because they had been busy building a career and financially supporting their family, often take great pleasure in doing with their grandchildren what they missed out on with their own offspring (Findler 2009). In other words, grandfatherhood can offer men the opportunity to compensate for their absence from family life when their children were young. According to Thomas (1986) in later years although women often continue their ‘mothering’ roles, the gender division of roles which is so prevalent when raising children becomes blurred and men often change, become gentler, and share more in family tasks.

The central role that women play in family life may also explain the special place often held by a daughter’s family in contrast with that of their sons. It is not surprising that grandparents’ preference for their daughter’s family over their sons runs like a thread through empirical studies and clinical reports (e.g., Rossi and Rossi 1990). Grandparents often describe their relationship with their daughter and her children as stronger and a greater source of reward than their relationship with their son’s family. Consequently, they tend to visit their daughter more often, feel more comfortable with her, and are not concerned that they may not be welcome or are interfering, as is often the case with their daughter-in-law (Seligman 1991).

The middle generation is commonly held responsible for the tri-generation relationship, with the mother being most active in the ties with the extended family (Katz and Kessel 2002). The relationship between a mother and her daughter-in-law is likely to be delicate and sensitive, as it marks an intimate encounter between two families that may represent different values, norms, and behaviors. By nature, it can be easier for the daughter in law to turn first to her own family of origin, particularly her mother for emotional and practical support. (Bowen 1978; Seligman et al. 1997). In general, the relationship between a woman and her spouse’s family might be sensitive and vulnerable; under unique circumstances such as raising a child with a disability, the sensitivity of these relationships might be even greater.

According to Katz and Kessel (2002), grandparents’ involvement in their grandchildren’s lives was mostly determined by the parents desires, as any information regarding their grandchild’s condition and its implications was entirely in the parents’ hands. The parents of the fathers often reported feeling particularly constrained and dependent on the willingness of their daughter-in-law to share this information with them. In Findler’s (2009) study as well, participants noted the different experiences they had in the relationships they had with their daughter’s family in comparison with the relationship they had with their sons.

3.9.3 Health

Grandparents in poor health or advanced age often feel that the physical effort required to provide the necessary instrumental support (i.e. picking up their grandchildren, playing with them, feeding, bathing, or putting them to bed) is too difficult for them (Burns and Madian 1992). The care needs of a grandchild with a disability may be even more demanding and require greater effort. Grandparents report that they are often unable to do everything they would like to with the child because of limited physical abilities, age, and/or health (Shaw 2005).

3.9.4 Geographical Distance

Geographical distance greatly affects grandparents abilities to support their children. This challenge is felt particularly in the United States, where grandparents often reside in a different state from their adult children (e.g. Gardner et al. 1994; Nybo et al. 1998). Geographic distance often hinders grandparents’ daily involvement in their grandchild’s life, particularly regarding information sharing. Gardner et al. (1994) found that the frequency of meetings between grandparents and their children and grandchildren declines when they live more than a 30 or 45 min drive apart. In such cases, the grandparents are less open to learning how to care for their grandchildren, and often find it hard to make themselves available for routine tasks on short notice, which is often a great need. According Anderson (2010b), some grandparents who lived far away and were unable to play an active role felt guilty as well as sad that they did not have the day-to-day chance to learn to interact well with their grandchild with the disability.

A qualitative study of grandparents of a child with a hearing impairment (Nybo et al. 1998) found that although geographic distance was not found to impact grandparents relationship with their adult child as it was possible to obtain information and provide emotional support over the telephone, the distance led to communication problems with the grandchild who was unable to communicate by phone. The authors claim that extreme geographical distance often left grandparents without the capacity to process or cope with the diagnosis, which in turn impeded their ability to communicate with the grandchild with a hearing impairment, and thus impeded their ability to form a meaningful relationship. Geographical proximity enables grandparents to familiarize themselves with the child’s environment and learn how to communicate with him or her.

Long distances are one of the main obstacles to forming and maintaining ongoing intergenerational relationships. Notably however, in the last decade, technological developments have changed this situation by offering various solutions such as internet text and face-to-face communications, which enable grandparents and children to conduct long and meaningful conversations on a routine basis. These changes and their impact on the family relationships have not yet been thoroughly examined in the literature.

3.10 Personal Growth Among Grandparents of a Child with a Disability

The birth of a grandchild with typical development is generally regarded as an unmitigated blessing (Findler et al. 2013). In contrast, the birth of a grandchild with a disability tends to be depicted as bleak and unfortunate. For many years, until the late 1980s, a child’s disability was seen as having significant exclusive negative repercussions on all family members—who often experienced chronic grieving, suffering, misfortune, ongoing crisis, depression, stress, and existential distress (Blacher 1984; Crnic et al. 1983; Olshanksy 1962; Seligman and Darling 1989; Turnbull and Turnbull 1990; Wolfensberger and Menolascino 1970). However, it became increasingly evident that childhood disability was experienced and addressed differently in different families; some families would cope and adapt and others felt overwhelmed and burdened. This difference raised many questions about adaptation, and led researchers to examine the factors that contribute to or inhibit adaptation to childhood disability. Thus, many dimensions of adaptation were examined, including psychological adaptation (e.g., Florian and Findler 2001); marital adaptation (e.g., Kersh et al. 2006; Suarez and Baker 1997); physical adaptation (e.g., Oelofsen and Richardson 2006); and parental functioning (Baker and Heller 1996).

Whereas many researchers continued discussing the negative aspects of the crisis related to childhood disability and the factors that could facilitate adaptation (Florian and Findler 2001; Wallander et al. 1989), the first signs of the new, more positive and hopeful approach, began to appear in books written by parents of a child with a disability, who described a different picture of parenting than the one painted in the professional literature. While the picture painted by the parents did contain the elements of hardship and pain, it also revealed a sense of distinctiveness, triumph, and strength. Parents spoke of the gap between their personal experiences and the messages they received from healthcare professionals and society as a whole. Although this group of writers was small, their voices carried a new message which was impossible to ignore. Parents described emotional and spiritual development, improvement in marital relations, a new view of the world, wonder at the reactions of siblings without a disability, and a change in the family dynamics (Dougan et al. 1979; Good et al. 1985; Turnbull and Turnbull 1990). Similar testimonies were reported in qualitative studies which listed a range of insights regarding new-found emotions, the development of intimate relationships, and other positive changes that took place after the birth of a child with a disability (e.g., Scorgie et al. 1996; Stainton and Besser 1998).

There is no doubt that families of a child with a disability are faced with a formidable challenge. However, it would appear that despite the difficulties, stress, and hardship, many families adapt to the circumstances and live rich full lives replete with positive benefits, new insights, and growth (Findler and Vardi 2009; Hastings and Taunt 2002; Konrad 2006). As a result of this understanding, the literature began to present a fuller picture of families’ experience of disability. Studies that adopted this new, more positive, approach towards understanding the experiences of grandparents of a child with a disability, sought to both remedy the nearly exclusive literary focus on the negative aspects of grandparenting a child with a disability (i.e. stress and burden), as well as to explore the common assumption that the absence of a disability results in a completely positive experience of grandparenthood (Findler 2014). For example, Findler (2014) found that grandparents of a child with a disability and grandparents of children without a disability reported the same degree of positive responses to grandparenthood, with the grandparents of children without a disability reporting more negative affect. Some of the participants in the study whose grandchildren did not have a disability admitted candidly that although their new role in the family was a source of love and joy, it was also quite demanding. According to one grandmother:

In contrast to the whole romantic thing, it’s another stage in life that requires work. To tell the truth…it’s not an easy job. I feel it’s a burden, work, and giving.

In contrast, instead of focusing on the negativity, demands, and burden, grandparents of a child with a disability often strove to convey optimism and strength, and focused more on mobilizing to help their children and grandchildren.

Personal growth is defined in the literature as positive changes and finding meaning in the face of crisis or existential distress (Tedeschi and Calhoun 1995). Growth is a process associated with stressful situations and/or events which lead individuals to fundamentally doubt their view of themselves and of the world; in such situations of stress, individuals’ typical coping mechanisms are no longer effective or appropriate. Growth that emerges from such a context may be manifested in a number of ways including a new appreciation of life, an enhanced sense of strength and power, improved interpersonal relationships, changed priorities, spiritual development, or the discovery of new meaning and purpose in life. Various terms and definitions are used in the literature to describe these changes, such as stress-related growth (Park et al. 1996), posttraumatic growth (Tedeschi and Calhoun 2004), benefit-findings (McMillen and Cook 2003), and thriving and adversity growth (Linley and Joseph 2004).

According to Tedeschi and Calhoun (1995), while crisis and trauma may generate negative responses such as depression, helplessness, and distress, it may also be construed as a challenge which can lead to positive changes. Specifically, as a result of the cognitive and emotional process following a crisis, sometimes the trauma is perceived as having positive meaning in the present or for the future. Such a change in perspective helps individuals understand themselves and the world in a new way, and may lead to positive changes in behavior and functioning. Unexpectedly, those who undergo crisis often regard themselves as smarter, more mature, and more blessed following, and perhaps even due to their experience. A person’s understanding of a crisis and the meaning he or she attributes to it have a crucial effect on the manner in which they cope with the event and its consequences (Janoff-Bulman 1992; Lazarus and Folkman 1984; Schaefer and Moos 1992; Taylor 1983).

The newly gained positivity and growth identified by parents of a child with a disability led researchers to examine the potential positive implications on additional family members, including siblings (e.g., Findler and Vardi 2009) and grandparents (e.g. Findler 2014; Findler et al. 2014; Schilmoeller and Baranowski 1998; Woodbridge et al. 2011).

Studies conducted since the mid 1990s occasionally found evidence that the difficulty and pain reported by grandparents following the birth of a child with a disability was accompanied by recognition of favorable aspects of themselves and their family members. Schilmoeller and Baranowski (1998), for example, described how over time, negative feelings were replaced with positive emotions such as acceptance, security, blessing, gratitude, strength, and vitality. Similarly, Woodbridge et al. (2011) found that grandparents of a child with a disability, for whom this was not their first grandchild, felt that the experience of grandparenting a child with a disability forced them to reexamine their values and priorities, as well as their identity as grandparents. They felt proud of the key role they played in caring for the child and of the flexibility they displayed in their willingness and ability to move from one identity to the other. Grandparents also reported taking pride in their child’s strength and coping mechanisms, the grandchild’s achievements, and in the unconditional love and devotion displayed by their child’s spouse towards their grandchild (Woodbridge et al. 2009). Nonetheless, these reports were largely anecdotal, and did not paint a complete picture of the potential positive aspects of having a grandchild with a disability.

Tedeschi and Calhoun (2004) and Calhoun and Tedeschi (2006) further developed a model of posttraumatic growth, categorizing positive outcomes of crisis in broad domains: changes in self-perception: strength and new possibilities; changes in interpersonal relations; and changes in life philosophy: priority, appreciation, and spirituality. To further examine the experience of grandparents of a child with a disability and the potential positive implications of such a circumstance, Findler (2009) conducted a qualitative study that identified the major themes of growth among grandparents in accordance with this model.

Findler’s (2009) study, which examined 38 grandparents of children with an intellectual disability and 19 grandparents of children with typical development, found that participants in both groups reported growth; in the wake of grandparenthood, all of them had feelings they had never had before, an intensity of emotion that was not produced by other contexts in their lives. Positive outcomes ranged from a new sensation of joy and happiness to physical changes and a sense of renewed energy. As one grandmother stated:

The pleasure is unbelievable. It does something incredible from a lot of perspectives, particularly the emotional. It opens new channels. I think there’s even something hormonal in the story.

Another grandmother remarked:

It’s everything in my life. I’m ecstatic that I’m a grandmother. It’s the best time of my life.

Grandparenthood also allowed these individuals an opportunity to reflect on their lives and compare their functioning as parents with their role as grandparent. This comparison shed light on their personal development, greater maturity, and the new skills they had acquired since raising their own children. In the words of one grandmother:

It activates systems I didn’t have with my children. There’s no question it’s something different…Here, with the grandchildren you’re much more grown up, much more mature in a lot of ways. You’re more available, you don’t get angry any more. Here anything is possible. Your whole attitude comes from an entirely different place. It’s different.

The grandparents felt their new role revealed aspects of their personality that had not been apparent in earlier years and in previous roles. As one grandmother stated:

Anyone who knows me wouldn’t say I’m soft. I was always the strong one. I discovered my sensitivity and sentimentality. I didn’t know how sensitive I was. They drew my soft underbelly out of me. It’s very moving.

Although both grandparents of a child with a disability and grandparents of a child without a disability reported growth, the growth was similar in some dimensions and different in others: Among the grandparents of children with typical development, growth was expressed in feelings of unadulterated pride, new abilities, and great pleasure in the grandchild’s achievements. Among the grandparents of a child with a disability, growth was generally mixed with feelings of hardship and pain. Thus, unlike anticipated normative events in the life of the family, the birth of a child with a disability is often a shock that may generate the type of experience described in the literature as posttraumatic or stress-related growth. The grandparents’ growth manifested itself in the domains defined by Tedeschi and Calhoun (2004): A change in self-perception, interpersonal relationships, and change in life philosophy.

Grandparents experienced an increased sense of personal strength becuase the birth of the grandchild with a disability, and his or her presence in their lives, enabled them to learn about their own capacities. They discovered in themselves qualities such as sensitivity, patience, and empathy, along with wisdom and the ability to find information and suggest effective solutions. According to one of the grandmothers:

I knew before that I was very open and tolerant of people who are different, but I got confirmation of it. I discovered a depth of feeling in myself that I pretty much denied before.

Grandparents found themselves learning the new skills needed for the child with a disability and his or her family, as well as developing a special sensitivity which was needed in the times when stress and emotions ran high and any word could easily be misunderstood and hurt the child or the parents. A significant change in affect was also experienced by grandfathers, who reported that although throughout their lives they had restrained their feelings both at work and at home, the birth of the grandchild with a disability sobered them up and they became deluged with emotions which they no longer hid from those close to them.

Alongside this new-found sensitivity, grandparents are often required to commit themselves to the family of the child with a disability and lend practical assistance. Their response to the new needs with which the family is confronted reveals an altruism of which the grandparents are quite proud. In the words of one grandmother:

I learned that I know how to give, that I’m very strong, that I’m willing to give up everything in return for being able to offer support, for being able to help overcome the crisis.

More meaningful interpersonal relationships, another domain of growth, also emerged from grandparents’ reports. This change was manifest in the enhancement of marital relations between the couple (the two grandparents), who, after many years together, began to develop a new closeness. As one grandmother remarked:

I think becoming grandparents brought us together in a special way that’s new and different and very strong. Today we share experiences that give us both a lot of joy, and that creates a strong bond. My husband, who didn’t share at all in raising our children, now helps a great deal and is very involved because he’s compensating himself for the time he didn’t give the children. It makes me very happy. I really enjoy watching him in these situations that didn’t happen before. He’s gentler. I’m finding sides in him I never knew before. He’s opened up.

Grandfathers also expressed renewed appreciation of their wives. As one grandfather put it:

I’ve learned that my wife has an infinite capacity to give. She gave of herself before too, it’s just greater now. I always admired her, she’s always been special, but now she’s twice as much the object of my admiration.

In addition, the grandparents enjoyed and felt enriched by a new level and type of dialogue with their children. They reported a two-fold benefit in terms of the pleasure and reward they got from their grandchildren along with closer relationships with their own children. The tight bond with their children led to a pattern of interpersonal relations that was significant and profound, and helped to mend past misunderstandings as well. The grandparents felt that they began to earn their children’s appreciation and gratitude for their help and support. Nearly 90 % of the grandparents in Anderson’s report (2010a) felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer. Many expressed pride in their child’s strength and commitment as he or she faced raising a child with a disability. In the words of a Grandmother:

We’re there in 10 minutes whenever she asks. It mellowed the relationship between us. She suddenly saw what I’m willing to do for her. Paradoxically, the child brought us closer together. It’s like a gift in the midst of all the hardship.

Additionally, grandparents learned to appreciate their children more. Specifically, they reported being impressed by their children’s parenting skills and the way they in which they had suddenly gone from being dependent to being independent mothers and fathers with impressive values and priorities from which the grandparents themselves could learn. Before their very eyes, their “spoiled” child had become a devoted parent, investing all of his or her effort in the child. According to one of the grandfathers:

I don’t have words to describe it, I really don’t. What parents he (the grandchild) has. That’s probably the reason such incredible things are happening with the child.

Another grandfather remarked:

My daughter and her husband are amazing. They grew up to be parents and human beings, and I really think that in this sense the grandchild is a gift. He’s always teaching us about ourselves.

The change in interpersonal relations was felt outside the framework of the family as well. Participants reported that since the birth of the grandchild with a disability, those social relationships that remained intact were based on trust. Grandparents began to invest in the quality of their relations with friends, a trend characterized by building deeper and more intimate relationships, and ridding their social network of superficial connections; they learned who their real friends were and made a conscious decision to surround themselves with people with whom they had meaningful relationships. Moreover, the experience of having a grandchild with a disability made them more sensitive to other children and adults in general, an attitude that also impacted their social relations positively.

In addition, acknowledgement of their hardship and vulnerability in regards to the grandchild with a disability encouraged many grandparents to seek help, with some joining support groups. Such groups typically offered them their first opportunity to share their emotions with other people in a similar situation. The ability to discuss their experience and the pain it engendered often led to greater openness and willingness to share feelings.

Grandparents of a child with a disability also reported a change in philosophy of life: priorities, appreciation, and spirituality, the third domain of growth. Specifically, grandparents of a child with a disability often undergo a crisis of values. For example, on the one hand, they belong to a society that worships physical perfection and intellectual achievements, a society in which disability or illness are perceived as a tragedy, inferiority and/or flaw (Livneh 1988). On the other hand, social norms dictate that one is expected to accept and love their children and grandchildren unconditionally. As a result of this conflict, the grandparents are forced to modify the value system in which they were raised, a system upheld by their surrounding social environment, and to learn to value different qualities (Menolascino 1968; Wolfensberger 1967). Grandparents’ in Findler’s (2009) study found themselves reevaluating attitudes they had always taken for granted. This change was expressed, for example, in celebrating a small improvement as achievement and/or relating differently to physical appearance. Woodbridge et al. (2009) similarly report that grandparents of a child with a disability took great pride in their grandchild’s achievements, feeling that every small step was beyond all expectations.

The change in philosophy is also expressed in more clearly defined life goals, which are the products of an internal cognitive process that takes place in the wake of a negative event. Paradoxically, in order for positive changes to occur, the negative event must be sufficiently unsettling to alter people’s perspective of themselves or of the world. As McMillen and Fisher (1998) mention, research suggests that often people with the highest exposure to the negative event are the ones most likely to perceive benefit (McMillen et al. 1997; Park et al. 1996; Tedeschi and Calhoun 1996). In the words of one grandfather:

The child taught me that you have to invest more and believe more. Above all, you have to believe. I was not a believer.

Some grandparents felt new dimensions of spirituality or closeness to God as expressed by a grandmother:

…I have a talk with GOD every morning, and I thank Him, something that I had never done before. With time, I see things differently… I see that I have to take advantage of every day in my life, not to dwell in the past or the future, and I’m very much concerned with the issue of health. One cannot always implement this, but every day is an extra gift…

The gap between the qualitative studies that highlight the positive experiences of families with a child with a disability and the earlier quantitative studies that cast a shadow on this experience indicated that a different type of “lighting” was required to discern the positive aspects in family life. Consequently, new quantitative research aimed at exploring the positive implications of harsh life events began to appear in the literature. Based on initial research findings, instruments were devised by King and Patterson (2000), Scorgie et al. (2004), and Stainton and Besser (1998), to measure growth from adversity. Some of these measures were used to examine the experiences of parents of a child with a disability.

Two recent quantitative studies investigated, for the first time, the positive repercussions and sense of growth among grandparents of a child with an intellectual disability (Findler 2014) and of grandparents of a child diagnosed with cancer (Findler et al. 2014). In the first study, 94 grandparents of a child with an intellectual disability were compared with 105 grandparents of a child with typical development to identify similarities and differences between the groups. The Post Traumatic Growth model suggested by Schaefer and Moos (1992) was used to examine variables that might influence perceptions of the crisis and contribute to positive outcomes. The variables that were examined included: event-related factors, represented by the presence of a grandchild with a disability; personal traits, examined through self-differentiation, perception of four dimensions of grandparenthood (emotional, symbolic, cognitive, and behavioral), demographic characteristics such as age and gender; and environmental factors, represented by family cohesion and flexibility and social support. The coping resources included in the original model of Schaefer and Moos (1992) were not examined in the study.

The findings revealed similar responses amongst both groups of grandparents. Specifically, a relatively high level of growth as well as similar internal and external contributors to growth were found among all the participants. The differences between the two groups were not associated with the presence or absence of a disability, but rather with demographic characteristics: differences were found between men and women, between older and younger grandparents, and between those in better and poorer health. Not surprisingly, woman, who are typically more invested in their family roles and regard them as a form of self-fulfillment, reported higher personal growth than men, as did grandparents who were younger and in better health. As advanced age and poorer health may cause discomfort, illness, or physical restrictions, such grandparents can be expected to find it harder to invest the effort required for intensive involvement or interactions with their grandchildren.

The symbolic dimension of grandparenthood contributed to personal growth in both groups of grandparents in the study. This dimension relates to the pleasure and satisfaction derived from the role as compared with the role of parent, or in the sense of immortality or continuity it may provide (Neugarten and Weinstein 1964). The respondents felt that as grandparents they were compensating for what they had missed out on as parents, and felt that grandparenthood gave them the opportunity to improve their relationships with their own children. Moreover, grandparenthood gave them the opportunity to express their vitality and capabilities, and contribute to the family, all of which afforded them a sense of personal growth and accomplishment.

Personal growth was also experienced by grandparents who reported less negative affect associated with the role of grandparent. This connection is consistent with the findings of other studies that adopted the approach of positive psychology (e.g., Fredrickson 2005). Negative emotions can have devastating effects and amongst other things, may be expressed in depression and rage. While such negative responses may arise in any interaction with a grandchild, the less frequently they occur and the better the individual’s emotional state is, the more growth they experience from their role as grandparent. Taking an active part in expanding the child’s knowledge affords grandparents an appreciation of their importance to the family and the special role they play in the child’s life; such feelings contribute to a sense of personal growth. The more the grandparents were involved in educating and enriching their grandchild, the more growth they reported.

The external resource of family cohesion, i.e. the degree of emotional connect or disconnect among family members (Olson et al. 1983), also contributed to a stronger sense of growth among participants in the study (Findler 2014). A high level of family cohesion facilitates harmonious intergenerational relationships and the ability to derive pleasure and satisfaction from being a grandparent. Those reporting a high level of cohesion felt that their family experienced close emotional ties, clearly defined boundaries, interest in each other’s lives, and good communications, all of which enabled the expression of both positive and negative feelings. As family cohesion affects the individual functioning as well as the family as a whole (Moos and Moos 1976; Russel 1979), it is not surprising that it was found to predict the personal growth of grandparents.

The second study referred to above (Findler et al. 2014) compared 56 grandparents of a child who survived cancer with 60 grandparents of healthy children. It was found that within two to three years after the grandchild’s recovery, the grandparents had resumed their routine and reported a quality of life similar to that of the grandparents of healthy children. However, the difficult period the family had undergone and the support grandparents had offered during that time took a toll on the grandparents’ health. Yet despite having to pay this price, grandparents reported higher personal growth than the comparison group. Their growth was reflected in all three domains: greater appreciation of themselves, improvement in interpersonal relations and in the importance they attributed to them, and a change in their worldview and philosophy of life. The complex picture which shows greater growth among the grandparents of a child who recovered from cancer, reveals the uniqueness of personal growth namely, growth is a reflection of change.

This contention is further supported by the differences that emerged between the pattern of contributions of internal resources to the personal growth and quality of life of these grandparents. While a high level of coherence contributed to the quality of life of grandparents, a low level of this resource contributed to growth. According to Antonovsky (1987), people with a strong sense of coherence perceive events in their lives as less threatening, have faith in their ability to cope with challenges, and adapt to difficult situations more easily. Hence, when faced with a dramatic life crisis, grandparents with a high level of this trait could call on this crucial resource. Despite the circumstances, they believed their world to be comprehensible, manageable, and predictable, and were thus generally able to maintain balance and overcome the crisis or stress with the help of their personal resources. As a result, they displayed better adaptation and succeeded in maintaining their quality of life and normal routine. In contrast, grandparents with limited internal resources found themselves to be lacking control and felt a high level of uncertainty in their world which they felt to be chaotic. The crisis disrupted their lives to the extent that it compelled them to change. Seeking out new sources of strength and coping, they discovered features and capacities within themselves that they had been previously unaware of; in other words, they experienced growth (Findler et al. 2014).

All the grandparents in these two studies showed similar degrees of joy and happiness in their roles, along with similar degrees of new-found softness, patience, readiness, and commitment. In the interpersonal realm as well, grandparents expressed renewed appreciation for their spouses, children, and grandchildren. These studies reinforce that grandparenthood can welcome an opportunity to reevaluate and improve relationships, and to compensate for what grandparents had lacked or missed out on in the past. However, grandparents of a child with an intellectual disability or life-threatening illness were distinct from grandparents of children with typical development in terms of the content and intensity of the experiences they described. For grandparents of a child with a disability, the joy and happiness are mixed with pain, concern, and sorrow. In contrast to the similarities found in the personal and interpersonal dimensions, a change in the third domain of growth, philosophy of life, was seen by grandparents of a child with a disability or illness. Despite their years and experience, the presence of this grandchild caused a major disruption that led to a reexamination of former priorities, worldview, and attitudes, which resulted in a modification of their philosophy of life, a hallmark of growth.

Grandmothers and grandfathers are an important part of the support system of their families, particularly when a grandchild has a disability. Until now, most of the literature focused on these grandparents’ roles and contributions to the nuclear family (i.e. to their children and grandchildren). This chapter illuminated the unique experiences of the grandparents themselves. With all of the complexity and vulnerability in intergenerational relationships, grandparents who feel valued, feel that they have a unique role, and feel like they can contribute to all that is happening in the family, also experience vitality, meaning in their lives, and even growth. In sum, without understanding the process that grandparents go through, the implications of having a grandchild with a disability on their lives, and the various meanings of intergenerational connections in this context, it would not be possible to get the best from this unique asset of the family.