Abstract

A qualitative study explored mothers' experience of the birth of a child with Down syndrome within a sociocultural context. Nine mothers of children with Down syndrome were interviewed. Mothers discussed responses to their child's diagnosis as well as negative attitudes toward disability that were displayed by members of the medical community. The narratives highlight the process of meaning-making that these mothers engaged in, their resistance to the dominant discourse on disability, and their eventual transformations in perceptions of disability and motherhood. The study suggests that the meaning of Down syndrome may be culturally embedded and that mothers of children with Down syndrome locate their child's disability within a social environment.

The birth of a child is generally considered to be a joyous event, although it is often accompanied by new challenges, conflicting emotions, and redefined roles for parents. The birth of a child with a diagnosed disability is, in some ways, no different in this regard and yet in others, it is a uniquely different experience that transforms mothers' expectations of parenthood as well as their definitions of normalcy. Although families of children with disabilities have been scrutinized for decades, recent years have witnessed a significant change in conceptions of familial adjustment to the presence of a child with a disability. Traditional research based on a clinical perspective pointed to predominantly negative outcomes for parents of children with developmental disabilities, suggesting that the experience of chronic sorrow, helplessness and guilt, psychological distress, and a persistent state of “mourning” are typical among this group (e.g., Fowle, 1968; Olshansky, 1962; Solnit & Stark, 1961). These assumptions of the inevitability of grief and pathology among families of children with developmental disabilities are being increasingly challenged as researchers “are now turning more frequently to the parents themselves for their own interpretations of their situations” (Wickam-Searl, 1992, p. 251). A growing body of literature suggests that, after an initial period of uncertainty, most families of children with developmental disabilities tend to regain healthy family functioning or even thrive, and the quality of their lives resemble those of families in general (Ferguson et al., 2000; Stoneman & Gavidia-Payne, 2006; Van Riper, in press). Although many parents of children with developmental disabilities report increased demands, higher levels of stress, or negative feelings, they simultaneously report positive perceptions, increased familial closeness, personal growth, and enrichment in their lives as a result of their experiences with their children (Abbott & Meredith, 1986; Hastings & Taunt, 2002; Hornby, 1992; Mullins, 1987; Stainton & Besser, 1998). Goddard et al. (2000) indicated that the narratives of parents of children with disabilities challenge stereotypical views about these families and present a critical perspective that acknowledges both the difficulties as well as the joys of this experience.

Despite this shift in research findings, the notion of the birth of a child with a developmental disability as presenting unmitigated hardship for a family continues to frame the dominant discourse on parenting a child with a disability. The term dominant discourse has been used to refer to a set of culturally derived values about what is considered normal and desirable (Goddard et al., 2000), or situated ways of acting, interacting, believing, and valuing acquired through participation in socially meaningful groups and linked with social roles of status and privilege (Gee, 1999, 2001). According to Morton and Gibson (2003), the dominant discourse on disability encompasses the lay knowledge of disability that informs individual and institutional practices. It includes culturally accepted beliefs about people with disabilities as inferior or burdensome, disability as something to be feared or shunned and life with a disability as simply not worth living. The dominant discourse on parenting a child with a disability includes perceptions of these parents as either overwhelmed with ongoing difficulties and unmitigated distress or as stoic survivors continually overcoming seemingly insurmountable challenges (Goddard et al., 2000). Parents of newborn children with developmental disabilities typically encounter a rhetoric that centers on themes of “devastation” and loss. This is further perpetuated in the written literature that these parents receive as well as by professionals who often focus on families' need to grieve for the child they had thought they would have. Ferguson, Gartner, and Lipsky (2000) asserted that there seems to exist a strong belief that a child with a severe disability “represents an unquestioned tragedy and lasting hardship for the family of the child” (p. 72) and that it is this notion that has framed many discussions about prenatal genetic testing and selective abortion of fetuses with genetic syndromes. Similarly, Parens and Asch (2003) argued that the practice of the selective abortion of fetuses with potential disabilities is based on misinformation regarding what life is like for individuals with disabilities and their families. This raises relevant questions concerning those factors that contribute to and sustain the belief that having a child with a disability is a predominantly burdensome and tragic event and those that would result in a different outcome (Fine & Asch, 1988).

Variability in individual parents' adaptation to the birth of a child with a developmental disability may be understood in the context of the ways in which this experience is interpreted by them or the meaning that they attach to this life event. However, individuals do not exist in isolation and the meaning of this experience, like all others, may be culturally embedded. According to the social constructionist viewpoint, knowledge is a collaborative enterprise and individual experiences exist only in the context of socially and historically situated interchanges among people (Gergen, 1985). Individual realities are seen as resulting not merely from factors inherent in the individual or in the situation but also from the dynamic interaction between the individual and the environment. Consistent with this paradigm, it is being increasingly asserted that what we call disabilities are not absolute conditions but rather, relative categories that depend on social and organizational beliefs, values, and practices (Bogdan & Taylor, 1994; Finlay & Lyons, 2005; Taylor, 2000). Danforth and Navarro (1998) asserted that the “maintenance and furthering of the diagnosis and the human condition called ‘mental retardation’ relies on the words and actions of professionals and nonprofessionals” (p. 32). Similarly, from a social constructionist position, Kleiwer (1998) argued that normality and impairment reflect the current cultural authority of groups such as psychiatrists, “who are charged with defining what constitutes the differences that matter,” and that “Down syndrome does not imply a scientifically deduced state as much as a social reality that exists within constantly shifting relationships of power and control” (p. 15).

Despite the growing recognition of disability as a social construction among researchers, much of the medical profession continues to adhere to a view of disability that is often referred to in the disability community's literature as the medical model. This perspective is characterized by the assumption that the source of the “problems” related to disability is located within individual bodies and by the belief that increased levels of disability are associated with decreased quality of life (Saxton, 2000). Medical interpretations of disability fail to acknowledge its culturally embedded nature, and, at the core of this view, disability is seen as a biological limitation that needs to be “fixed” or an absolute condition that is better prevented (Asch, 1989). The medical discourse on disability, with its clinical focus on the body, is characterized by a view of disability as defining identity and personal deficit (Morton & Gibson, 2003). There is documentation that the medical discourse on disability frames the interactions between physicians and mothers when a child's diagnosis is being conveyed. For example, recent studies involving mothers of children with Down syndrome showed that physicians emphasized only the negative aspects of Down syndrome, offered inadequate information about Down syndrome, or provided explanations that were factually incorrect (Skotko, 2005; 2006). Other studies have indicated that obstetricians, obstetric nurses, or genetic counselors may display negative attitudes or express personal biases in discussing a prenatal diagnosis or in interacting with parents after the birth of their child with Down syndrome (Helm et al., 1998; Rapp, 2000). Further, studies have found that physicians may assume that mothers would want to terminate a pregnancy after a prenatal diagnosis of Down syndrome, convey a belief that this is the most rational choice, or overtly encourage mothers to terminate their pregnancies (e.g., Cooley, Graham, Moeschler, & Graham, 1990; Felker, 1994; Skotko, 2005a) and that mothers' ambivalence toward termination is likely to be met with resistance, disbelief, or a lack of support from doctors and genetic counselors (Helm et al., 1998; Rapp, 2000).

Consistent with a social constructionist framework, this study examined mothers' experience of the birth of a child with Down syndrome within the broader context of the meaning of disability and normalcy in society and explored the extent to which this experience is influenced by the dominant discourse as well as the medical discourse on parenting a child with a disability.

Method

Using qualitative methods, detailed narratives were collected from mothers about their experiences of the birth and diagnosis of their child with Down syndrome as well as their perceptions of being a mother of a child with Down syndrome. This method was used because of the study's acknowledgment of the social contexts within which meaning is derived. Mothers' generated stories in response to open-ended questions; however, their narratives guided the direction of the interviews as well as the content of subsequent questions. This is consistent with standpoint epistemology (Harding, 1993), which emphasizes that the shared and situated perspectives of those who have been marginalized provide the grounds for knowledge or the sites from which critical questions emerge.

Participants

Nine mothers of children with Down syndrome, who resided in New Jersey, were interviewed for this study. They were recruited largely through a New Jersey–based early-intervention program. The author is not professionally affiliated with this program and has no professional role within it. The participants comprised 1 Filipino and 8 Caucasian mothers, all of whom had completed college and 4 of whom held graduate degrees. At the time of the interview, their ages ranged from 24 to 45 years, and the ages of their children with Down syndrome ranged from 4 months to 3 years. Of the 9 mothers, 4 had other children prior to the birth of their child with Down syndrome, 3 had subsequent children at the time of the interview, and 1 mother was expecting her second child at the time of the interview. There were no diagnoses of disability among the siblings of the children with Down syndrome. Of the 9 mothers, only 1, who was a special education teacher, reported having any significant contact with individuals with disabilities prior to the birth of her child. All others had limited contact with individuals with disabilities prior to the birth of their child with Down syndrome. Four mothers had received a prenatal diagnosis of Down syndrome and 5 had become aware of their child's diagnosis after the birth of their child. Of the 5 mothers who had not received a prenatal diagnosis, 2 did not undergo prenatal testing because it had not been offered to them by their physicians. The other 3 had declined prenatal genetic testing. These mothers reported that they had experienced difficulty in conceiving and had been concerned about the risk of miscarriage. Further, these mothers were committed to continuing their pregnancies regardless of the prenatal diagnosis. Most of the mothers in the sample did not cite religion as the primary reason either for their reluctance to undergo prenatal testing or for their decision to continue their pregnancies after a diagnosis of Down syndrome. It is notable that each of the mothers in the study indicated a strong willingness and desire to participate in the study.

Data Collection and Analysis

Semistructured interviews were conducted with each mother, which typically lasted between 2 and 4 hr and were mostly conducted over two sessions of 1–2 hr each. In response to a series of open-ended questions, each mother generated an extensive narrative related to her experience of the birth and diagnosis of their child with Down syndrome. All interviews were audiorecorded and later transcribed. Written notes were also taken.

There were three components to the interviews. The first was concerned with the mothers' pregnancies, the birth of their child, the ways in which they became aware of their child's diagnosis, their own initial reactions to it, as well as the reactions of others around them. Mothers were asked to recall all of the verbal and nonverbal interchanges that followed the news of their child's diagnosis, including those with medical professionals. In addition, they were asked to reflect on their initial perceptions of what their lives would be like as mothers of children with Down syndrome. In the second component, mothers were asked to reflect on the quality of their present lives. They were asked to describe their daily routines, their participation in social activities, and their relationships with their children. They were also asked to discuss what they considered to be some of the more difficult aspects as well as some of the joys of their parenting experience. The third component focused on mothers' long-term expectations for their children and the ways in which they envisioned their children's lives in the future. They were also asked to elaborate on their understanding of current regulations and educational policies related to disability as well as their interpretation of the widespread routinization of the practice of prenatal genetic testing.

During data analysis, the transcribed interviews were reviewed exhaustively for commonalities in the core experiences of the mothers and for shared perspectives on the interpretation and meaning of their experiences. This is a well-accepted, qualitative data analysis method (Bogdan & Biklen, 2002). In analyzing the data, an emergent themes approach (Glaser & Strauss, 1967) was used. Coding categories were not established prior to the interviews but were identified during the process of transcribing and listening to the interviews. They were based on the frequency and consistency of shared experiences or perspectives reported in the stories of the mothers. Clusters of similar ideas (i.e., discrete happenings and events that appeared to pertain to a similar phenomenon) were grouped together under the more abstract classification called a coding category, using the open-coding method (Straus & Corbin, 1990). In addition, the data were analyzed to yield topics that were most salient to the mothers. Consistent with Harding's (1993) standpoint epistemology, critical questions emerged from the stories of the lived experiences of these mothers and their perceptions of the situated meaning of their experiences. Through this process, five core categories of findings emerged, of which three had been anticipated prior to conducting the study; the last two were unexpected findings. The data were then coded on the basis of these identified categories of shared experiences. All of the data analysis and coding was done by the author.

Results

The narratives yielded data on a broad spectrum of issues related to becoming a mother of a child with Down syndrome. It should be noted that there was considerable variability in individual responses to having a child with Down syndrome. The core aspects of these mothers' experiences are discussed below under five categories of findings, in the chronological order in which they generally appeared in the narratives.

Initial Reactions to a Diagnosis of Down Syndrome

Every mother in the group recalled in great detail the moment that they first heard their child's diagnosis as well as their own reaction to it. Most reacted to the diagnosis in a highly negative manner and described their initial response as characterized by profound sadness. Mothers reported that they had felt “distraught,” “angry as hell,” or “very depressed,” and their narratives were rich in metaphors that revealed the intensity of their immediate reactions. For example:

Josephine: It's like the earth opened up and swallowed me into a pit … I was shell-shocked. I was horrified. I was saddened.

Jane: I just felt so alone. Everything was just empty. … It just felt like I was going to be in this bottomless pit. Like falling … I felt so alone.

Maggie: Like the air being taken out. Poof. Like a balloon.

In discussing their initial appraisals of their situations, some mothers recalled having had stereotypical perceptions of people with developmental disabilities and a gloomy mental image of what life would be like for them as a parent of a child with Down syndrome. Most expressed that they had limited exposure to individuals with developmental disabilities prior to the birth of their own children.

The Search for Meaning

The initial reactions of the mothers were followed by efforts at interpreting the event and deriving the meaning of the diagnosis in a social context. For most mothers in this group, questions concerning the meaning of Down syndrome were first addressed by physicians or geneticists, whose explanations, based on the medical model of disability, typically focused on the health concerns, cognitive impairment, physical differences, and speech delays that often accompany a diagnosis of Down syndrome. In contrast, the mothers were interested in the social meaning of the diagnosis in addition to the medical one. The interpersonal ramifications of Down syndrome and questions over issues of normalcy were among the pressing concerns of many of these mothers immediately following their child's diagnosis. In their stories, there are also accounts of encounters with physicians who made reference to normative social outcomes for the family. These were reported as having had a highly positive impact on mothers' prenatal or postnatal experiences. For example, 1 mother described that a geneticist showed her a photograph of a young child with Down syndrome that had been taken at the child's birthday party. The mother recalled that this positive visual image allowed her to appraise her own situation very differently and to understand that, “It's gonna be OK. … I'm gonna have these pictures too.” However, these kinds of interactions were relatively few. More typically, mothers reported that they actively searched for alternative interpretations of the meaning of Down syndrome than the ones that their physicians had supplied. To this end, the specific activities that they engaged in varied and ranged from Internet searches to seeking spiritual explanations. It is notable that many of the mothers sought contact with individuals with developmental disabilities or their families or read published narratives written by other parents of children with disabilities in their efforts to gain a more meaningful understanding of their child's diagnosis.

Medical and Social Messages

Every mother in the group recounted interactions that contained negative messages regarding the experience of having a child with Down syndrome, and the most frequently mentioned source of such messages was the medical community. Of the 4 mothers who had received a prenatal diagnosis, 2 perceived that their physicians had been coercive in urging them to terminate their pregnancies. The narratives were also rife with examples where physicians shared personal biases, used inappropriate language, or offered inaccurate information concerning Down syndrome (note: all names are pseudonyms).

Charlotte: Dr. Doe said to me that basically I was having a vegetable. … And he said seventy-five percent of them will never be able to feed themselves. … He said their IQ's are, I don't remember exactly the number he used but he gave us a very low IQ. … And he was actually talking us into termination. Trying to talk us into terminating.

Amy: I got a call from the OB doctor and he basically said: “I'm really, really sorry but the results are not good. … Your child has Trisomy 21.” … And, um, then he did proceed to tell me my options for termination. … He said: “I'm just telling you that it's really not fair to the sibling … it puts a burden on them.”

One mother reported that she had been deeply affected by her physician's negative affect and expressions of pity during her prenatal check-ups:

Lea: What were not helpful were visits to my OB. He was Dr. Doom and Gloom. Instead of celebrating that we were having a baby. He'd always say “How are you?” In a pitiful way.

Some mothers who had received a postnatal diagnosis believed that their physicians did not approve of their choice to forgo prenatal genetic testing. One mother recounted that interactions with medical professionals following the birth of her child were marked by condescension and a “lack of warmth.”

Sarah: I felt that most of the doctors there felt that given the fact that you can control for Down syndrome, you should definitely terminate.

The same mother also recalled:

Sarah: I remember I had one doctor who told me, who'd just had a baby and she said: “Oh, I did an amnio and I definitely would have aborted if it was Down syndrome.”

Some recounted that their interactions with hospital nurses were characterized by insensitivity or pity, and 1 mother was disconcerted by her nurse's use of the term mongoloid.

Jane: None of the nurses had mentioned anything about the baby. Nothing. No congratulations, nothing. Really no-one. I feel like they were trying to avoid my room.

Most notably, each of the mothers who had received prenatal genetic counseling spoke of negative encounters with genetics counselors. According to one mother,

Amy: The geneticist was very biased toward termination. Very much so. … It was only the negative, it was the negative side was presented to us.

One mother recounted that during a genetics counseling session after the birth of her daughter, the counselor focused only on stereotypes of people with Down syndrome:

Mary: [The genetics counselor] said: “You know she's probably going to have a weight issue. … and she's, you know, she's not going to live very long. … and they do have a weight issue.”

The medical community was not the only source of negative messages for these mothers. Many mothers recounted stories of family members or friends who had reacted to the news of their child's diagnosis as if they were “devastated.” Three of the mothers who received a prenatal diagnosis talked about having received pressure from their families to consider terminating their pregnancies:

Mary: [My uncle] said: “This is a tragedy. You know, this is a tragedy to do this to this baby. Because you know it's going to be sick and you know it has Down syndrome. Why would you do this to the baby by having it?”

It is notable that most mothers reported that, after the birth of their child, they had encountered frequent questions regarding whether they had an amniocentesis or why they had chosen to forgo it.

Jane: [My great-aunt] said: “Didn't you get an amnio. … If you had known, you could have started over again and gotten, you know, had another baby.”

In discussing the reactions of their friends or members of their communities, mothers believed that most people had been supportive and helpful, although they also perceived social interactions to be frequently characterized by a level of discomfort and pity. In particular, mothers reported that they were the recipients of many expressions of sympathy (“I'm so sorry”) as well as admiration (“You must be a saint, I could never handle it!”). Although mothers perceived these comments to be well intentioned, they also believed that statements like these conveyed the idea that others would not choose this situation for themselves and reiterated a stereotypical belief that being a parent of a child with Down syndrome is a largely undesirable experience. In discussing their perceptions of cultural attitudes toward people with disabilities, most mothers in this group expressed a belief that society generally devalues people with disabilities and is uncomfortable around children like their own. This was reflected in statements such as,

Josephine: Everybody wants perfection. … And kids like Jessie are an affront. I really think they're an affront to the established order.

Donna: I hate to say it, but it comes down to financial economics. … A child with special needs is economics … low return for the input. I think that's the way she could possibly be viewed by a segment of the population.”

Maggie: The fact that families are terminating these pregnancies is just showing me that there is some lack of acceptance.

Resistance to the Message

This category refers to the deconstruction of the perceived cultural messages by these mothers and their resistance to the dominant discourse on having a child with Down syndrome. The mothers' stories indicated that they engaged in critical examination of the ways in which their lives and those of their family were perceived by others:

Jane: [People] think you're overwhelmed, you're running around and I think they think you just don't have fun. … They think if you're a family with a disabled kid that you, your family doesn't have fun. … I disagree totally. We have a lot of fun.

Lea: I don't think they view [my life] as a positive life or one they'd embrace. … think they think it's much harder than it is … I think what scares people about my life is the fact that they're so different physically … because as a society we're so caught up with perfect. Anything that's flawed is not acceptable, whether it's a flawed child or a flawed nose.

Some mothers expressed that they experienced anger or sadness in response to negative attitudes toward disability that continue to exist in society:

Mary: I'm sad that there are people walking around with these biases, you know, attaching stigmas to these children. … The sadness is not associated with the fact that my daughter has Down's. It's associated with the fact that we can live in a place where people won't educate themselves about the diagnosis. You know, we're living in a place where people are living with Down's. Don't you want to know who your neighbor is before you feel bad for him?

Some mothers articulated a belief that it was necessary and important for them to represent their own lives and those of their families in a manner that challenged the stereotypical view of tragedy or pathology and to provide social “cues” to others regarding how they should react to their situation. Other mothers spoke of their efforts at educating their communities about Down syndrome or of their engagement in activities related to disability advocacy.

Transformations

The narratives of these mothers are indicative of transformations in the ways that they have come to make sense of their experiences. The transformations were of three types:

Personal transformations

Mothers talked about their perceptions of how they have changed as a result of their experiences. Most of the changes that mothers perceived in themselves were positive; for example, some believed they had grown or had “become stronger” or “more confident.” One mother expressed that she believed she had become “more connected” with her spouse, and another spoke about having become “more aware of the political and social world.”

Transformations in interpretations of motherhood

The narratives pointed to transformations in definitions of motherhood as a result of having a child with Down syndrome. These mothers acknowledged that there were definitely many difficulties and stressful moments that arise when raising a child with a disability; however, they attributed these to be a part of motherhood or, quite simply, another aspect of parenting a child. Thus, it is worth noting that although these mothers identified stressors related to having a child with Down syndrome, they also interpreted these stressors as being related to parenting rather than parenting a child with a disability.

Transformations in interpretations of the familial experience

The most significant transformations appeared to be in the mothers' understanding of what life is like for families of children with Down syndrome. The majority of the mothers in the sample rejected the notion that their experience was a negative one, and most described it by highlighting both the difficulties and some of the positive aspects of the experience. In the accounts of their current lives, the negative feelings and dark metaphors that had depicted their initial reactions to the diagnosis were largely absent. Instead, mothers described their lives as “active,” “busy,” “stressful,” “fulfilling,” and “content.” Their narratives contained accounts of sadness and stress as well as accounts of rewards and joys. In reflecting on the experience of having a child with Down syndrome, 1 mother described it as “a different kind of happiness.”

Finally, the narratives pointed to a shift in the mothers' focus from their child's diagnosis to the social ramifications of that diagnosis. Most mothers spontaneously raised questions related to the social barriers they believed their children will face either in childhood or in the adult world and expressed concerns over issues of social acceptance, friendships, and rejection. Thus, the perceived social consequences of Down syndrome were among the most predominant concerns of these mothers. This is seen in statements such as,

Josephine: Is she going to have friends? … Is she going to be rejected? I worry about that.

Donna: I'm still sad. I'm sad when I hear kids playing. Because I've already made the assumption that my daughter won't be included. … I don't get sad about my daughter, I get sad about the way the world views her and values her.

Maggie: I hope that that she gets invited to birthday parties. I hope she gets included in that.

Discussion

The findings of this study strongly suggest that the ways in which a child's diagnosis of Down syndrome is perceived by mothers is contextually bound and has as much to do with the sociocultural constructions of disability and normalcy as with the biological realities that accompany it. The narratives point to the prevalence of negative expectations for families of children with Down syndrome, and, yet, these mothers told a very different story of families like their own. The majority of the mothers in this group emphatically rejected notions of suffering, hardship, and sadness as characterizing their families' experience. Instead, they chose to define the quality of their own lives and those of their families in much the same terms as one might expect from mothers of children without disabilities. Furthermore, the shift in many of these mothers' focus of attention from their child's diagnosis per se to issues of social inclusion, acceptance, and rejection suggest that mothers of children with Down syndrome locate disability not only in their child but also in the social and political environment.

The study reveals that stereotypical representations of Down syndrome as well as notions of persistent hardship for families of children with Down syndrome continue to exist in medical discourse and practice. The data indicate that the language, attitudes, and actions of medical professionals may influence the ways in which a diagnosis of Down syndrome is interpreted by mothers. For example, expressions of sympathy from medical professionals were counterproductive for the mothers in this study, and coercion from physicians to consider terminating a pregnancy after a prenatal diagnosis of Down syndrome were reported as being among the most stressful and negative aspects of their early experience. Limited exposure to individuals with Down syndrome combined with the absence of accurate information regarding Down syndrome were sources of additional stress and uncertainty for these mothers. It was strongly indicated in this study that access to updated information regarding outcomes for individuals with Down syndrome as well as opportunities to connect with other families of children with Down syndrome would be beneficial to mothers during the initial stages of adjustment after a child's diagnosis. Finally, the stories of these mothers indicated that the themes of grief and sorrow continue to dominate the discourse on families of children with Down syndrome. The reactions that these mothers received from others were frequently characterized by expressions of extreme sadness, sympathy, or a level of discomfort, and these reactions are reflective of a cultural view of tragedy for families of children with Down syndrome. Furthermore, it is clear that families of children with Down syndrome continue to encounter a rhetoric that centers on the notion of the undesirability of parenting a child with Down syndrome and the belief that it is better to prevent “suffering” for the child and hardship for the family through prenatal genetic testing and the selective abortion of fetuses with Down syndrome. Most notable, the frequency with which these mothers encountered questions concerning whether they had had an amniocentesis or why they had chosen to forgo prenatal genetic testing suggests that these women are among a unique group of mothers who are often expected to justify their choices to have their children.

Limitations of the Study

In considering the findings of this study, it is necessary to recognize its limitations. First, the sample size was small, and the mothers in this sample constituted a relatively homogenous group in terms of ethnicity and socioeconomic background. In addition, the study may also have been subject to selection bias. It is possible that mothers who had certain kinds of experiences after the birth and diagnosis of their child may have volunteered to participate in the study. It is also worth noting that all mothers in the sample had at least a college education, and this is likely to have influenced their interpretations of the medical discourse as well as their individual abilities to seek alternative meaning in response to their child's diagnosis. For these reasons, it is difficult to generalize these findings to other groups of mothers of children with Down syndrome. An additional limitation of this study pertains to the absence of fathers' perspectives. Future research should include the perspectives of mothers and fathers of children with Down syndrome from diverse backgrounds to gain a deeper understanding of this familial experience.

Conclusion

For the mothers in this study, Down syndrome was seen as residing not just in their child but also in the fabric of the daily interchanges and activities that took place in the context of the family's social environment. This is consistent with the work of many researchers who have asserted that the experience of disability is best understood as a socially constructed phenomenon (Bogdan & Taylor, 1994; Danforth & Navarro, 1998; Kleiwer, 1998; Taylor, 2000). Greater acceptance of a view of disability as a culturally embedded and relative category has implications for professional practice and public policy. Medical and mental health professionals should avoid making assumptions of negative outcomes for families of children with Down syndrome and shift toward a more contextualized understanding of the experience of parenting a child with a developmental disability. Further research should explore whether disability studies programs for medical students and doctors could positively influence their interactions with mothers following a diagnosis of Down syndrome. This study also highlights that issues of social inclusion and rejection may be among the predominant concerns of mothers of children with Down syndrome, and this finding has implications for educators, particularly those involved in curriculum design for inclusive schools. However, additional research is needed to understand the extent to which social concerns influence the educational choices that these mothers make for their children with Down syndrome.

The stories of these mothers lend support to Davis' (1997) assertion that “the ‘problem’ is not the person with disabilities; the problem is the way that normalcy is constructed to create the ‘problem of the disabled person’” (p. 9). Ultimately, in questioning the notion of perfection as normative, the narratives of these mothers contribute to a broader discussion on the meaning of disability in society and on variability in childhood.

References

References
Abbott
,
D. A.
and
H. M.
Meredith
.
1986
.
Strengths of parents with retarded children.
Family Relations
35
:
371
375
.
Asch
,
A.
1989
.
Reproductive technology and disability.
In S. Cohen & N. Taub (Eds.), Reproductive laws for the 1990's (pp. 69–124). Clifton, NJ: Humana Press
.
Asch
,
A.
2000
.
Why I haven't changed my mind about prenatal diagnosis: Reflections and refinements.
In E. Parens & A. Asch (Eds.), Prenatal testing and disability rights (pp. 234–258). Washington DC: Georgetown University Press
.
Bogdan
,
R.
and
S. K.
Biklen
.
2002
.
Qualitative research for education: An introduction to theory and methods.
Boston: Allyn & Bacon
.
Bogdan
,
R.
and
S. J.
Taylor
.
1994
.
The social meaning of mental retardation: Two life stories.
New York: Teachers College Press
.
Cooley
,
W. C.
,
E. S.
Graham
,
J. B.
Moeschler
, and
J. M.
Graham
.
1990
.
Reactions of mothers and medical professionals to a film about Down syndrome.
American Journal of Disabled Children
144
:
1112
1116
.
Danforth
,
S.
and
V.
Navarro
.
1998
.
Speech acts: Sampling the social construction of mental retardation in everyday life.
Mental Retardation
36
:
31
43
.
Davis
,
L. J.
1997
.
Constructing normalcy.
In L. Davis (Ed.), The disability studies reader (pp. 9– 28). New York: Routledge
.
Felker
,
K.
1994
.
Controlling the population: Views of medicine and mothers.
Research in Sociology and Health Care
11
:
25
38
.
Ferguson
,
P. M.
and
A.
Asch
.
1992
.
Lessons from life: Personal and parental perspectives on school, childhood and disability.
In P. Ferguson, D. Ferguson, & S. Taylor (Eds.), Interpreting disability: A qualitative reader (pp. 108–140). New York: Teachers College Press
.
Ferguson
,
P. M.
,
A.
Gartner
, and
D. K.
Lipsky
.
2000
.
The experience of disability in families: A synthesis of research and parent narratives.
In E. Parens & A. Asch (Eds.), Prenatal testing and disability rights (pp. 72–94). Washington, DC: Georgetown University Press
.
Fine
,
M.
and
A.
Asch
.
1988
.
Disability beyond stigma: Social interaction, discrimination, and activism.
Journal of Social Issues
44
:
3
21
.
Finley
,
W. M. L.
and
E.
Lyons
.
2005
.
Rejecting the label: A social constructionist analysis.
Mental Retardation
43
:
120
134
.
Fowle
,
C.
1968
.
The effect of the severely mentally retarded child on his family.
American Journal of Mental Deficiency
73
:
468
473
.
Gee
,
J. P.
1999
.
An introduction to discourse analysis: Theory and method.
New York: Routledge
.
Gee
,
J. P.
2001
.
Reading as situated language: A sociocultural perspective.
Journal of Adolescent and Adult Literacy
44
:
714
725
.
Gergen
,
K. J.
1985
.
The social constructionist movement in modern psychology.
American Psychologist
40
:
266
275
.
Glaser
,
B.
and
A.
Strauss
.
1967
.
The discovery of grounded theory: Strategies for qualitative research.
Chicago: Aldine Press
.
Goddard
,
J.
,
R.
Lehr
, and
J.
Lapadat
.
2000
.
Parents of children with disabilities: Telling a different story.
Canadian Journal of Counseling
34
:
273
289
.
Hanson
,
M. J.
and
M. F.
Hanline
.
1990
.
Parenting a child with a disability: A longitudinal study of parental stress and adaptation.
Journal of Early Intervention
14
:
234
248
.
Hastings
,
R. P.
and
H. M.
Taunt
.
2002
.
Positive perceptions in families of children with developmental disabilities.
American Journal on Mental Retardation
107
:
116
127
.
Helm
,
D. T.
,
S.
Miranda
, and
N. A.
Chedd
.
1998
.
Prenatal diagnosis of Down syndrome: Mothers' reflections on supports needed from diagnosis to birth.
Mental Retardation
36
:
55
61
.
Hornby
,
G.
1992
.
A review of fathers' accounts of their experiences of parenting children with disabilities.
Disability, Handicap and Society
7
:
363
268
.
Kleiwer
,
C.
1998
.
Schooling children with Down syndrome: Toward an understanding of possibility.
New York: Teachers College Press
.
Morton
,
M.
and
P.
Gibson
.
2003, April
.
The rhetoric and practice of partnership: Experiences in the context of disability.
Paper presented at Connecting Policy Research and Practice: The Social Policy Research and Evaluation Conference, Ministry of Social Development, Wellington Convention Center, Wellington, New Zealand
.
Mullins
,
J. B.
1987
.
Authentic voices from parents of exceptional children.
Family Relations
36
:
30
33
.
Olshansky
,
S.
1962
.
Chronic sorrow. A response to having a mentally defective child.
Social Casework
43
:
190
193
.
Parens
,
E.
and
A.
Asch
.
2003
.
Disability rights critique of prenatal genetic testing: Reflections and recommendations.
Mental Retardation and Developmental Disabilities Research Reviews
9
:
40
47
.
Rapp
,
R.
2000
.
Testing women, testing the fetus.
New York: Routledge
.
Saxton
,
M.
2000
.
Why members of the disability community oppose prenatal diagnosis and selective abortion.
In E. Parens & A. Asch (Eds.), Prenatal testing and disability rights (pp. 147–164). Washington, DC: Georgetown University Press
.
Skotko
,
B.
2005a
.
Mothers of children with Down syndrome reflect on their postnatal support.
Pediatrics
115
:
64
77
.
Skotko
,
B.
2005b
.
Postnatal support for mothers of children with Down syndrome.
Mental Retardation
43
:
196
212
.
Solnit
,
A.
and
M.
Stark
.
1961
.
Mourning and the birth of a defective child.
Psychoanalytic Study of the Child
16
:
523
537
.
Straus
,
A.
and
J.
Corbin
.
1990
.
Basics of qualitative research.
Thousand Oaks, CA: Sage
.
Taylor
,
S. J.
2000
.
“You're not a retard, you're just wise:” Disability, social identity and family networks.
Journal of Contemporary Ethnography
29
:
58
92
.
Van Riper
,
M.
in press
.
Families of children with Down syndrome: Responding to a change of plans with resilience.
Journal of Pediatric Nursing.
.
Waisbren
,
S.
1980
.
Parents' reactions after the birth of a developmentally disabled child.
American Journal of Mental Deficiency
84
:
345
351
.
Wickam-Searle
,
P.
1992
.
Mothers with a mission.
In P. M. Ferguson, D. M. Ferguson, & S. J. Taylor (Eds.), Interpreting disability: A qualitative reader (pp. 251–274). New York: Teachers College Press
.

Author notes

Author: Priya Lalvani, MA (priyalalvani@msn.com), Doctoral Candidate, Developmental Psychology, Graduate Center, City University of New York, New York, NY 10016