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https://doi.org/10.1177/0731948717696258

Learning Disability Quarterly 2018, Vol. 41(1) 7 –18 © Hammill Institute on Disabilities 2017 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0731948717696258 journals.sagepub.com/home/ldq

Special Series: Parent Voice in Educational Decision Making for Students With LD

Since the passage of the Education for All Handicapped Children Act (1975) and its subsequent reauthorizations, the Individuals With Disabilities Education Act (1990, 1997) and the Individuals With Disabilities Education Improvement Act (IDEIA; 2004), much has been written about the implementa- tion of shared decision making among parents and profession- als. Despite the law’s mandate that parents be considered “full and equal participants” (IDEIA, 2004, 34 CFR 300.322), doc- umentation of professional domination over parents has per- sisted for decades (Fish, 2006; Goldstein, 1993; Kroth & Edge, 1997; Lipsky, 1985; Sonnenschein, 1981; Valle, 2009; Vaughn, Bos, Harrell, & Lasky, 1988; Yoshida, Fenton, Kaufman, & Maxwell, 1978).

In response to reports of passive positioning of parents within decision-making contexts, researchers have acknowl- edged the need for professionals to implement models and strategies to increase positive relationships with parents by engaging parents as authentic partners, actively facilitating collaborative decision making, and increasing effective com- munication (Cheatham, Hart, Malian, & McDonald, 2012; Dabkowski, 2004; Diliberto & Brewer, 2014; Lo, 2012; McNaughton & Vostal, 2010; Staples & Diliberto, 2010).

Moreover, the significance of cultural diversity in regard to parent participation has been raised by a number of researchers (Harry, 1992, 2008; Harry, Allen, & McLaughlin, 1995; Harry, Klingner, & Hart, 2005; Kalyanpur & Harry, 1997; Kalyanpur, Harry, & Skrtic, 2000). In particular, Beth Harry and col- leagues have explored the significance of cultural meanings of disability among diverse families as well as potential conflicts

between family and institutional values. Their work challenges conceptualization of parents as a monolithic group, and calls for the development and implementation of culturally respon- sive practices (Conroy, 2012; Harry, 2008; Hart, Cheatham, & Jimenez-Silva, 2012; Povenmire-Kirk, Bethune, Alverson, & Kahn, 2015; Salas, 2004; Sheehey, 2006). In other words, it seems to matter who sits across the conference table and how professionals engage them.

This study focuses only upon mothers who are likely to engage more often and more intensely with school profes- sionals than fathers or couples (Valle, 2009). Landsman (2009) made a similar assertion about mothers, in general:

In American culture, it is to women, not men, that the “special” qualities necessary to raise a child with disabilities are attributed. And though each family makes its own arrangements, research consistently shows that North American women bear the major responsibility for providing care for a disabled child. (p. 9)

Thus, it bears significance to investigate the larger cultural context of typical American motherhood—defined as unmarked by disability—in much the same way that the study of whiteness contributes to our understanding of

696258LDQXXX10.1177/0731948717696258Learning Disorder QuarterlyValle research-article2017

1The City College of New York, New York City, USA

Corresponding Author: Jan W. Valle, The City College of New York, 160 Convent Avenue, New York, NY 10031, USA. Email: [email protected]

Across the Conference Table: Private and Public Mothering of Children With Learning Disabilities

Jan W. Valle, EdD1

Abstract In this article, a narrative inquiry approach is used to investigate how mothers report their experiences of parenting children with learning disability (LD) within the culture of American motherhood and to explore what impact such experiences of motherhood might have upon their relationships with school professionals. Analysis of the mothers’ narratives yields two overarching themes: The Private Mother (inner thoughts and feelings about her own mothering) and The Public Mother (outward responses to others’ comments and behaviors about her mothering). Two subcategories are discussed within each overarching theme: Internalizing and Resisting Social Messages and Inside the Family (The Private Mother), and Judgment in Public Spaces and Mother as Outcast (The Public Mother). The author addresses implications of these findings and offers recommendations for collaborating with mothers of children identified as LD.

Keywords mothers, LD, professional/parent collaboration

8 Learning Disability Quarterly 41(1)

diversity within American culture (Kennedy et al., 2005; Matias, Viesca, Garrison-Wade, Tandon, & Galindo, 2014; Zeus & Broderick, 2011). If we are to move beyond inviting parents to participate superficially in professional spaces of our creation, I argue that it is necessary to educate ourselves as professionals about the larger cultural context within which mothers of children with disabilities (regardless of individual cultural diversity) experience motherhood, which, in turn, should serve to clarify perspectives and responses of mothers with whom we seek to establish posi- tive relationships. Thus, this narrative study had two objec- tives: to investigate how mothers report their experiences of parenting children with learning disability (LD) within the culture of American motherhood, and to explore what impact such experiences of motherhood might have upon their relationships with school professionals.

A Theoretical Framework for the Culture of American Motherhood

In this section, three aspects of motherhood are explored: Pursuit of The Good Life, Pursuit of Perfection, and Pursuit of Education.

Pursuit of the Good Life

Doris Lessing, 2007 Nobel Prize winner for literature, observed how “difficult it is to detach ourselves from the mass emotions and social conditions of the age we’re born into” (Bolick, 2015, p. 14). And so, it is that the experience of motherhood necessarily intersects with the social influ- ences of the culture within which a woman carries out her role as mother. What does the cultural context look like for contemporary mothers in America? It is not without conse- quence that the backdrop against which contemporary mothers raise their children in America is driven by a con- sumer-driven frenzy that reflects a modern society saturated by market ideology:

Building on a philosophical foundation of unbridled self- interest and commercial freedom, and supercharged now by a revolution in information technology, we have built a dynamic society of tantalizing appeal. But the resulting mix of technology affluence, and competitive social challenge that we have created for ourselves is radically different from the natural world in which our species rose to dominance some two hundred thousand years ago. That radical difference in social habitat has fostered a craving and an acquisitive behavior in America that are now testing the limits of our ancestral biology—in mind and body—and eroding the foundations of our community. (Whybrow, 2005, p. 2)

Likening our frenetic consumer-driven culture to a kind of collective mania, Whybrow (2005) further suggested that it is this “pop culture of self-desire—together with its

rampant consumerism and treadmill-like demand—that is now equated in many minds as the ‘American way of life’” (p. 15). Pashkin (2001) described the interplay between society and motherhood in the following way:

To think of motherhood as an institution, then, is to focus on a society’s specific mechanisms for shaping what mothers do and how they feel about what they do, as well as others’ treatment and expectations of mothers. In other words, as an institution, motherhood is a human invention rather than a natural phenomenon. This idea allows us to consider how motherhood changes over time and varies across societies. (pp. 60–61)

Warner (2005) also studied contemporary American mother- hood as an institution. She compared her experiences as a first-time mother while living as an expatriate in France with the culture of American motherhood that she experienced upon her return to the United States. In short, she observed that American mothers, in contrast to French mothers, con- strain themselves by responding to an intense cultural “pres- sure to perform, to attain levels of perfect selflessness” (p. 16). In an effort to make sense of American motherhood, Warner conducted a study of nearly 150 women (the major- ity White, middle-class, and college-educated) about their experiences as mothers. She concluded that the middle class in America is profoundly influenced by upper middle-class families who are, after all, “our reference point for what the American good life is supposed to look like and contain” (p. 20). And it is this striving for The Good Life in America that is driving contemporary motherhood—especially for White middle-class mothers.

If, as Whybrow (2005) contended, we are a nation living more and more under the spell of market ideology and com- petition, perhaps it is this particular cultural influence that is contributing to a growing sense of unease among middle- class mothers:

To many of us today, it feels as though the pie of life—the ultimate rewards spelling success and happiness in adulthood— is becoming ever smaller, and if we don’t prepare our children well now to seize their piece, they may end up going hungry altogether. (Warner, 2005, p. 162)

Thus, it seems that mothers may feel compelled to add long- range strategic planning to their maternal duties in hopes of giving their children a competitive edge in the race for suc- cess. It is worth noting that this kind of “supermom syn- drome” is largely—although not exclusively—a White middle-class phenomenon. As Chase (2001) pointed out, “Mothers are held responsible for everything that happens concerning their children, but many mothers do not have the support they need to do the difficult work of ‘intensive mothering’ expected of them” (p. 74), thereby increasing maternal anxiety about mothering “well enough.”

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Pursuit of Perfection

It is worth noting that the pressure to enact perfection in American motherhood begins at conception. Good Mothers avail themselves of medical care, and carefully follow rec- ommended guidelines for nutrition and activity. They read- ily submit to routine prenatal testing—although deep down most believe that problems in pregnancy happen to Other Mothers not to mothers who do everything right. Landsman (2009) explained that expectant mothers believe that “posi- tive pregnancy outcome is within the control of a woman who is in compliance with expert medical advice” (p. 18). In other words, it seems that Good Mothers who practice perfect compliance expect in return a talisman of sorts against complications.

For mothers who give birth to children whose disabilities are apparent at birth, the experience is fraught with a frenzy of medical activity in response to motherhood suddenly gone off script. Viable infants are whisked away to neonatal units, and the reconstruction of motherhood begins: “If the status of a mother of a child with an impairment represents a disruption . . . it is because ‘real’ motherhood in American culture is contingent upon the birth, not of a child but of a ‘normal’ child” (Landsman, 2009, p. 109). As Gregory (1991) pointed out, baby care manuals and pregnancy books present the overall message that “disability is unlikely, undesirable, and to be avoided at all costs” (p. 124). Upon the birth of a child with obvious disabilities, the construc- tion of the “imperfect” mother and child begins right away. In contrast, mothers of children whose disabilities emerge as they develop—as is the case with LD—lose a “perfect” child who becomes a “disabled” child upon evaluation by medical and/or educational professionals. And by exten- sion, the mother is likewise reconstructed as the mother of a child with a disability at the moment of diagnosis—meta- phorically stripped of her credentials as a “perfect” mother (Valle, 2009).

Mothers of children with disabilities apparent at birth or with disabilities that emerge during development find them- selves mothering within a social context that typically devalues children for being less than perfect (Landsman, 2009). If we consider the pressure upon contemporary American mothers who engage in a cultural competition for perfection, the mother of a child with a disability falls so far out of that competition as to be invisible. It seems that mother and child become inextricably bound by perceived imperfection.

Pursuit of Education

The formal schooling of children provides yet another stage upon which motherhood is enacted. It is a long-running per- formance spanning childhood, adolescence, and, in many instances, young adulthood (Valle, 2011). When mothers

engage with schools, they do so within a culture that is pub- lic education—a culture, like all others, defined by patterns of human activity, and social structures that embody its his- tory, beliefs, attitudes, practices, and values (Valle & Gabel, 2011). Pressures intensify as children become increasingly defined in terms of their relationship to an established “norm” of academic performance. And if women in our cul- ture, as Warner (2005) suggested, already feel pressured and consumed by maternal expectations and responsibili- ties, it is worth considering how they might experience the normative discourse that defines both their children and the meaning of academic success—particularly when the cul- tural script for motherhood is interrupted by disability or the threat of disability (Valle, 2011). These are treacherous waters indeed for mothers of children with disabilities to navigate. It stands to reason that the relentless focus upon normativity within schools may contribute to the maternal anxiety already induced by our culture.

Narrative Method

It is a rare mother indeed who claims a total lack of engage- ment with the social messages about motherhood that swirl about our culture. Most mothers, to one degree or another, favorably and/or unfavorably compare themselves with the ever-shifting norms imposed upon modern motherhood. Moreover, friends, family, and strangers feel free to offer both solicited and unsolicited advices on mothering. But for mothers of children with disabilities, there is no escape. The mere fact of “motherhood off script” is occasion for a public rendering of all manner of judgments and assessment, given that mothers are “the subjects of scrutiny and surveillance, both by professionals, academics, and the wider public, more generally” (Ryan & Runswick-Cole, 2008, p. 206).

Narrative structures, such as myths, fairy tales, legends, and stories, exist in all human cultures (Bettleheim, 1976; Bruner, 1990; Campbell, 1949). As Egan (1991) explained, “We are a storying animal; we make sense of things com- monly in story forms; ours is a largely story-shaped world” (pp. 96–97). Similarly, Polkinghorne (1988) asserted that narrative is the fundamental way in which human beings understand life:

[It] is a scheme by means of which human beings give meaning to their experience of temporality and personal actions. Narrative meaning functions to give form to the understanding of a purpose to life and to join everyday actions and events into episodic units. It provides a framework for understanding the past events of one’s life and for planning future actions. (p. 11)

How mothers experience motherhood reflects an under- lying assumption that “the important reality is what people perceive it to be” (Kvale, 1996, p. 52). People can truly be understood only within the context of their interactions with

10 Learning Disability Quarterly 41(1)

culture and others—“without the environment to engage and test its capacity to respond, it would have no living existence” (Clark & Holquist, 1984, p. 66). In this study, narrative methodology is used as a means to illuminate how mothers of children with LD make sense of their lived experiences.

Participants

The data that follow are derived from individual interviews conducted with 10 mothers of children with LD. Purposeful sampling was used to identify and select individuals whose experiences correlated with the topic under study (Cresswell & Plano Clark, 2011; Patton, 2002). Mothers were not selected based upon any configuration of negative and posi- tive experiences they may have had with school profession- als but rather for their interest and availability for participation.

Seven of the interviewees were White suburban mothers from both the northeastern and southeastern regions of the United States. Two participants are urban mothers who resided in a metropolitan area in the northeastern United States, and identified as African American and Latina, respectively. Another mother immigrated as an adult to the United States from Eastern Europe, and lived and worked in an urban location (see Table 1).

Narrative Procedure

Of the 10 mothers interviewed, eight requested to be inter- viewed in their homes. Two mothers chose alternative

spaces, including a spouse’s empty office on the weekend and a personal office space after work hours. An open- ended interview question was posed to elicit their experi- ences of mothering a child or children with LD. The average length of an interview fell between 11.5 hr and 2 hr. Participants were not limited to a specific length of time to narrate their stories, but rather encouraged to narrate their stories at a pace most comfortable for them.

Following each individual interview, the audiotape was transcribed of the session. In each of the transcriptions, ver- bal and nonverbal nuances were identified to better capture the essence of each participant’s narrative storytelling. For example, pauses, word emphasis (represented in italics), laughter, voice tempo and intensity, and body language (represented in bolded print) were notated. The participants reviewed and approved the transcripts.

Using Labov and Weletzky’s (1967) definition of narra- tive, passages were identified and marked within each tran- script that considered to meet the authors’ criteria for classification as narrative. Labov and Weletzky contend that there are five components that signal the presence of narrative within a speaker’s verbal expression: (a) Abstract (a brief summary of the story); (b) Orientation (time, place, persons); (c) Complicating Action; (d) Evaluation, Result, or Resolution; and (e) an optional Coda (which returns the speakers to the present). Each transcript was analyzed a minimum of 3 times for narratives that contained a story arc (beginning, middle, and end). A title was assigned to each story to reflect its essence (e.g., “The Evaluation,” “Other Mothers,” and “Society’s Eyes”). During the data analysis phase, the naming of narratives proved useful in two ways:

Table 1. Participant Demographics.

Participant Race/ethnicity U.S. region Community Label of child(ren)a

Lauren White Southeast Suburban Intellectual disability/language-based LD Maria Latina Northeast Urban Intellectual disability/language-based LD Kathleen White Southeast Suburban Eldest child: Behavioral disability/ADHD

Middle child: LD (reading, written expression) Youngest child: ADHD

Keline White Southeast Suburban LD (reading, math, written expression) Alexis Eastern European Northeast Urban Suspected language-based LD/ASDb

Diane White Southeast Suburban LD (reading, math, written expression) Jennifer White Northeast Suburban Eldest child: Mild LD/ADHD

Youngest child: Severe LD/ADHD Robin White Southeast Suburban Middle child: LD (math)

Youngest child: LD (reading, written expression) Zara African American Northeast Urban LD/intellectual disability ASD Jenna White Southeast Suburban Eldest child: LD (reading, written expression/ADHD)

Third child: ADHD Youngest child: LD (reading, written expression)

Note. LD = learning disability; ADHD = attention deficit hyperactivity disorder; ASD = autism spectrum disorder. aMultiple labels reflect simultaneous diagnoses and/or shifting diagnoses over time. bMother refused evaluation. School professionals suspected LD or ASD.

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First, the act of choosing a title helped to distill the core meaning of each narrative. Second, the titles were relied upon as reminders of narrative content, while cutting and pasting the narratives into categorical groupings.

Results

From the process of recursive coding described above, two overarching themes emerged: The Private Mother (inner thoughts and feelings about her own mothering) and The Public Mother (outward responses to others’ comments and behaviors about her mothering). Two subcategories of nar- ratives were further identified within each overarching theme: Internalizing and Resisting Social Messages and Inside the Family (The Private Mother) and Judgment in Public Spaces and Mother as Outcast (The Public Mother).

The Private Mother

It is said in popular culture that mothers give birth to babies along with a lifelong sense of guilt. Anxiety about “doing it right” is a feeling common to most mothers. In the narra- tives that follow, participants share their thoughts and feel- ings about mothering children with LD within a culture that actively breeds anxiety to perform motherhood “right.”

Internalizing and resisting social messages. As stated previ- ously, mothers of children whose disabilities emerge as they develop—as is the case of LD—find themselves in the posi- tion of reconstructing how they may understand their chil- dren and their status as mothers. Participants described the impact of a disability not only upon themselves but also upon their families.

Special education, like most professions, is organized around policies and procedures. School professionals strive to make transparent these policies and procedures to engage parents more fully in the process. Although such efforts are both well intentioned and necessary, we must also consider how our “taken-for-granted” procedures may play to the audience across the conference table. Although a mother most likely is aware of her child’s difficulties and suspects that a label might be forthcoming, she may not be prepared for the flood of emotions when confronted with confirma- tion of a disability. Likewise, professionals may be sur- prised or confused by the nature of a mother’s response to a disability diagnosis and recommendation for special educa- tion services. In the narrative below, Lauren, a White subur- ban mother of a daughter with multiple LDs, explained exactly how she was feeling right after school professionals delivered the news of her daughter’s diagnosis:

The first stages, as a mother, you’re trying to take care of yourself emotionally in trying to deal with a child that maybe reflects on you not being as good as you should be to society.

It’s not that you feel that way but that’s how society looks at you. You did something wrong. You’re grieving and dealing with all these labels and all of these guilt feelings—right or wrong—that you have inside.

Lauren’s internalization of societal messages about mother- hood is apparent within her words.

She understands that women are expected to contribute “perfect” children to society, mothers, not fathers, are responsible for the outcome of their children, and mothers of children with disabilities have done something “wrong” (Landsman, 2009; Pashkin, 2001). Given the number of procedures and the amount of paperwork to complete dur- ing a typical eligibility and placement committee meeting, school professionals may or may not be aware that confir- mation of a disability can set into motion intense feelings within the mother across the conference table. In other words, professionals may perceive a meeting as having gone well based on adherence to special education proce- dures, while the mother, a tangled knot of emotions, may leave the meeting and burst into tears.

As part of the psychoeducational evaluation, it is com- mon for professionals to inquire about a mother’s preg- nancy as well as her child’s early development. Moreover, additional questions may be asked about the home environ- ment to gather information about a child’s behavior outside of the school context. Although professionals understand their “fact-finding mission” as part of conducting a compre- hensive evaluation, Lauren explained that, as a mother, she experienced such questions about her private life as intru- sive and accusatory.

And from the very start, from the very beginning of testing, the assumption that I dealt with first of all was that the parents were doing something wrong to have caused these problems. In every, every situation I went to, I can never remember one that I didn’t have to first emotionally and verbally battle: “What’s going on in your home? Is there dysfunction in your home? Is there violence in your home that would be causing this child to have these problems?” And as a mother who is already hurting because your child is not right and who already feels that you’ve done something wrong or this child would be fine. You already feel like, you know, she was in my womb. What did I do that would have caused this child not to be right? Was there something I did during pregnancy or during delivery? So, you’re already just really battling within yourself about why has this happened and what do I need to do and trying to make sure that you deal with the guilt feelings that you feel that aren’t even right. It’s not that there is validity for them, it’s just that they’re natural because the thing you want most of all is for your child to be healthy and normal and have a wonderful life. So when you see this child that has some sort of disability, you just start digging within yourself. Then you go to the professionals and the first thing they say to you is—“Well, now what are you doing to have caused this?” Now you’ve got this huge emotional hurdle to cope with as you sit there and try to

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explain that you’re doing nothing. That you’ve given this child everything. That you’ve fed this child, you’ve bathed this child, you’ve not abused this child. And that’s a very difficult place. I think the mother is very fragile and very vulnerable. And then when people start bombarding you with suggestions that it may be your fault, it is really very emotionally difficult to cope with.

If we consider the culture of perfection that permeates mod- ern motherhood, Lauren’s visceral response to such ques- tions makes more sense. Placed by professionals in what feels to her like a defensive position, Lauren is expected to answer questions about her motherhood that, in most other social circumstances, would be considered personal and pri- vate. At the heart of the narrative lies Lauren’s shock at becoming the object of professional scrutiny herself. She experiences a routine evaluation procedure as a profes- sional judgment that both she and her child are defective. It seems that Lauren comes away from the parent interview convinced that she officially has veered off “the culturally appropriate trajectory” for American mothers (Landsman, 2009).

Maria, an urban Latina mother of two older biological children and a younger adopted daughter who was initially diagnosed as having an intellectual disability and later reclassified as LD, recalled the moment of her child’s initial diagnosis at which point she loses her identify as an ordi- nary mother and becomes the mother of a child with a disability:

When they said “retarded,” I stopped listening at that point. [deep pause] I’m getting a lump in my throat thinking about it. I couldn’t believe that I was sitting in this dark little room because there is no space in public school for anything. It’s always like this closet that we were in—this dim yellow bulb— sitting at a round table . . . I’m sitting in this room which is depressing enough as it is and they say borderline retarded. I wasn’t prepared for that. If I’m going to believe that, now I have to go in a totally different direction. If I’m going to believe that she’s borderline retarded, now what? Now what? Because we’re in grammar school. Is she going to get promoted? Is she going to be able to learn? What other services am I going to have to find out about? What else am I going to have to educate myself about? Who am I going to talk to? Who am I going to have to call? Oh, my God—what am I going to do next? It was too much. I was overwhelmed. [voice lowers] I had to leave. I said, “You know. I have to go home. I don’t feel well. I have to go home. I have to go home.” [voice lowers] I picked Lydia up and we went home. I went to bed for four days. I went to bed for four days and I didn’t think. I was in my bed, curled up in a fetal position. I didn’t want to read. I did nothing but vegetate for four days. Then it was like [claps]—a light bulb going off over my head. Like when you wake up and you feel refreshed—I got up and I said, “Time for action. Now let’s start.”

In the retelling of her story, Maria recalled a rather matter-of-fact delivery of news that her daughter is

“borderline retarded.” Against a backdrop of professional talk about eligibility and special education placement, Maria remembered questions racing through her mind about how to navigate a different future suddenly thrust upon her. If, as Warner (2005) suggested, modern mothers under ordinary circumstances feel pressure to engage their children in all kinds of opportunities to increase their chances for attaining The Good Life (thereby affirming their achievement as Good Mothers), the mother who learns that her child is behind in the race to success is in the position of letting go of her long-range strategic plan, and completely rethinking and reorganizing how to pro- ceed with scant understanding about what that might mean. Maria’s story illustrates how she responded to news of a differently imagined future by remaining in bed for 4 days grieving the loss of her former self as mother—then arising on the fifth day ready to accept her newly con- structed identity as a mother of a child with a disability and face the challenges ahead.

In contrast to Maria’s narrative of resiliency, Kathleen, a White suburban mother who resides in the southeast, talked about the profound impact of a conversation with a male psychologist regarding her eldest daughter’s behavioral, learning, and attentional challenges:

And I remember thinking so very clearly that I certainly do not need to be the mother of three children. I had this child who had this kind of behavior . . . I go to this child psychologist who was supposed to be so well-respected and I’m told that all the problems are me. Then I don’t really need to be having three children. I don’t need to be in this position on the earth. Slowly over the next four or five months, I became very suicidal. I thought I just don’t need to be a mother. Somebody else could mother these children better than I could. [voice lowers] That really did happen. [long and deep pause; looks away]

The blame assigned to Kathleen (and notably not her hus- band) burrowed so deeply within her sense of motherhood that she questioned her ability to parent at all—believing that her three children (all of whom have varying degrees of learning and attentional disabilities) might be better off with a different and more competent mother. So significant is Kathleen’s internalization of societal messages of her “less than” status as a mother of children with disabilities that she eventually becomes “very suicidal.” Kathleen’s residual shame was evident in her retelling of the event as she spoke in a low tone, paused long and deep, and looked away. Moreover, it is worth noting that Kathleen resides within a traditional, Southern culture where societal pressure to bear and raise Good Children is at a premium. Her public “fail- ure” as a mother became almost too much for her to endure. It is likely that the male psychologist featured in the narra- tive had little to no awareness about the devastating impact of his words upon Kathleen’s understanding of herself as a mother.

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Inside the family. Beyond a mother’s interior struggles as described in the previous section, a child with LD may also influence the mother’s relationship with family members— for example, spouse, other children, extended family (Abeel, 2004; Mooney & Cole, 2000; Schultz, 2012). It is also the case that mothers, far more often than fathers, take on primary responsibility for providing academic support at home even if their children receive special education ser- vices at school (Valle, 2009).

Given the tremendous investment of time required to monitor and facilitate the education of children with LDs, it is not uncommon for mothers to give more attention to a child with a disability than her other children without dis- abilities. In the following narrative, Keline, a White stay-at- home mother of five adopted children, talked about the amount of time required to support her son with LD in com- pleting homework every night and the possible ramifica- tions of that devotion upon her other children:

I’d also like to make a comment quickly about how it’s impacted my other children. It has definitely impacted them. So many times, they’ve come to me and said, “I’m supposed to read this out loud to you (this is my second grader) and you’re supposed to sign it.” And I find myself saying, “Just read it to yourself and I’ll sign it. I’m working with James and I don’t have time for you to read it to me. I know you can read it, honey, and I know you’re a great reader. Just go do it.” I fear that my other kids will turn it around and say, “James needs Mom’s help all the time and we don’t get any.” It’s really not been a problem, but I’ve made sure that—well, yeah, it probably has been a problem. It’s probably affected them in ways I don’t even know. [voice lowers] And I’ve probably just hoped that they weren’t being affected by it.

Keline’s narrative illustrates the balancing act required to support a child with LD, while responding to the needs of other children in the home. It is of interest that Keline initi- ated the topic of how her other children are affected by her investment in James’s LD, asserting that “[i]t has definitely impacted them.” Subsequently, however, she retracts this position when she noted that “[i]t’s really not been a prob- lem, but I’ve made sure that . . .”—and mid-sentence shifted yet again to a somewhat less emphatic stance about the impact than initially stated: “Well, yeah, it probably has been a problem. It’s probably affected them in ways I don’t even know.” As her voice lowered, Keline admitted that it may be wishful thinking that her other children have not been affected. What is significant about this narrative is the centrality of Keline’s concern—and her evident ambiva- lence—about how well she is mothering all of her children. Her conundrum is clear—what if meeting the needs of one child takes something as of yet undefinable away from the others? After all, the culture of modern motherhood demands attention not only to meeting a child’s present needs but also to ensuring his or her future success—and, in Keline’s case, times five.

As noted elsewhere in this article, Landsman (2009) asserted that “research consistently shows that North American women bear the major responsibility for provid- ing care for a disabled child” (p. 9). And so it seems to Alexis, who immigrated as an adult from Eastern Europe to the United States, that American public school personnel operate out of this assumption that she, as a mother— despite the fact that she is married—is responsible for her son’s academic and behavioral challenges:

I think that if my husband and I don’t divorce because of fights that we’ve had—because the days that they really get to me and make me feel like an insufficient mother and as a failure mother—those are the days we have fights. The father is a little more disconnected from the whole process. They always call the mother. And also because he’s a father and he’s at work and you are usually the one who interacts with the teachers and gets all this crap from the teachers.

Alexis’s husband can be disconnected from their son’s school problems not only because “he’s a father and he’s at work” but also because mothers in American culture, not fathers, are typically held responsible for the successes and failures of their children. (It is worth noting that Alexis holds a full-time job as a tenured professor.) Whatever the intentions of the teachers she described in her narrative, Alexis came away from these conversations feeling both “insufficient” and as a “failure” as a mother rather than embracing as a collaborative partner in her son’s education. Her husband did not grasp the nature of her engagement with school professionals because he is not positioned by American culture in the same way.

Diane, a White suburban mother of four, recounted how her intense and ongoing engagement with her youngest daughter, Heather (diagnosed with LD), contributed to the eventual unraveling of her marriage. Echoing Keline’s narra- tive, Diane described the nightly ritual dedicated to hours of reading, writing, and studying required to keep her daughter afloat in school. Although her older children were in college and high school during Heather’s elementary school years and required little academic supervision, Diane conceded that the investment of time required to ensure Heather’s edu- cational success came at a cost to her marriage:

I think that my involvement with it is one of the things that led to our divorce.

Because he began to get attention from other women. I was busy taking her to tutors, tutoring her—you’re exhausted. When you’re working with a child like this trying to coach them, you become mentally exhausted. And, no it did not cause the divorce. I’m not trying to blame that. I really am not. But when he is “making it” out in the world and then there are all these women out there patting him on the back and saying, “Oh, that’s wonderful!” and with me, I’d say, “Oh that’s good. Oh, I’m glad you won that case. But I’ve got to get over here.

14 Learning Disability Quarterly 41(1)

We’ve got to finish these two chapters tonight.” It never ended! I do think that that had some effect. Nobody has ever told me that, no counselor has ever said that. That is my own gut feeling. I would not ever want Heather to think that caused it. So, I do not think that did it. But I do think it contributed to the divorce. [voice lowers]

Diane’s narrative illustrates the toll upon a mother who ear- nestly responds to our culture’s expectation that she must work tirelessly to ensure her child’s current academic suc- cess to secure her future. And she does so at the expense of her marriage. For Diane, it seemed that the energy required to support a child whose academic performance falls out- side of the “normative” expectation and the energy required to sustain a marriage was, in the end, too much.

Maria likewise acknowledged that her intense focus upon the education of her daughter with LD contributed to the dissolution of her marriage:

Parenting a child with a disability to this degree because I really went in it into a full throttle I say is part of the reason that my marriage suffered and I’m divorced. My focus was always on the children. I know they say your husband should come first and stuff, but for me, even with my biological children, children were first for me always. I think it may have had an impact on my marriage.

In addition to the challenges mothers of children with LD describe about meeting the needs of spouses and chil- dren without disabilities, it appears that tension may also arise in regard to relationships with extended family. Not unlike the general public, extended family members may display societal attitudes and assumptions about children with disabilities. For example, Jennifer, a White suburban mother whose older daughter has milder attentional and learning issues than her son with severe hyperactivity and LD, described the language her mother-in-law used in speaking about both children:

My mother-in-law was horrified to hear that we had deficient children, as she referred to them. And when I said that they were not deficient they just learn differently, she said that she taught kindergarten for thirty years and she never had a child who was like either of them.

It seems that the shame of disability may spread up a family tree. Jenna, a White suburban mother of four sons, recalled her astonishment at learning of her mother’s opinion regard- ing her oldest son’s diagnosis of an LD and attention deficit hyperactivity disorder (ADHD):

I was pretty much shocked once we had Kyle diagnosed by the misconceptions out there. [pause] Especially with my own mother. When I told my mother that Kyle got diagnosed with ADHD and with a learning disability, she could accept the learning disability but not the ADHD. She said, “Oh, that’s

ridiculous. There’s too much of that going on and I think parents are just not willing to be parents and correct bad behavior. Too many kids are on medicine just because the parents are lazy.” So, I was going, “Ahhhh, no.” I just chose to ignore her.

The implications for Jenna as a mother are unmistakable and leveled at her by her own mother whose internalized understanding of a Good Mother apparently does not include a mother who medicates her child. Similarly, Robin, a White stay-at-home suburban mother of two daughters with LD, shared that her in-laws never accepted the diagno- ses of her children:

My husband’s family, on the other side, were people who never believed. They wanted nothing in the family that even remotely touched on a mental condition. “We don’t have this in our family. If we do, we don’t let anybody know what’s going on.” They never accepted the idea of a learning disability.

What is unspoken here is a not-so-subtle accusation that Robin (and her side of the family) has tainted her husband’s gene pool by introducing LD into the family.

The Public Mother

Beyond feelings of inadequacy and guilt, mothers of chil- dren with disabilities may contend with a public construc- tion of themselves and their children. Societal attitudes and assumptions about disability contribute to public judgment of mothers and their children whose behaviors often fall outside of an established norm. Moreover, the fact of having a child with disabilities appears to influence their perceived desirability to mothers of children without disabilities.

Judgment in public spaces. For mothers of children with dis- abilities, public spaces are indeed treacherous territory. In the narrative below, Jennifer, the mother of a son with severe LD and ADHD, recalled the anxiety-ridden experi- ence of attempting to contain her preschool-age child in full view of a judgmental public:

My son’s disabilities were so severe—slow processing speed and hyperactivity. When he was in a high chair in a restaurant— which was only done out of absolute necessity if we were traveling and had to eat out or something—he would make a big mess and in my own OCDness, I was always cleaning up after him as best as I could. He was disruptive. He was loud. I remember one time there was a table of two couples sitting next to us. And they were very judgmental in their looks and they were passing comments about this noisy child and just adding to all of our stress. When I got up to leave and walked past their table, one of the men said something to me about having such a disruptive child. “You shouldn’t take him out in public.” I looked to this person who was speaking to me and his wife was pregnant. I just looked at him and said, “Mister, you

Valle 15

better pray that baby inside is who you think it is because you never know what you’re going to get.”

In this scenario, the message is spoken aloud and directly to Jennifer—you and your child are not fit to be in public, and as such, you have no right to impose your “otherness” upon the public who has the right not to be exposed to this par- ticular range of humanity. The implication is that disability is expected to be contained elsewhere for the comfort of others. In her parting remark, Jennifer suggests to the man that disability does not happen just to Other People but could happen to him as well. It is worth considering the pos- sibility that any mother sitting across the conference table could be marked by multiple experiences of exclusion, such as the one described by Jennifer. If so, it is worth consider- ing how a mother might react, for example, to suggestion of a “special” education for her child outside of the general education classroom.

The spoken and unspoken message about where disabil- ity is “allowed” seems to follow mothers and children into all kinds of public spaces. For example, Zara, an urban African American mother, talked about her difficulty find- ing a place to worship when her son with severe learning and behavioral disabilities was quite young:

I was finally able to find a church that was accepting of Elliot so that the three or four of us could sit there during church service and Elliot’s whoops and honks and sucking on my dreadlocks and stuff is fine!

For mothers of children with disabilities, the everyday spaces available to other mothers can become occasions for judgment of their children and their mothering. Jennifer recalled how other mothers responded to her young son Owen’s severe hyperactivity in spaces where “perfect” chil- dren play.

Owen was so active that I always had him in some activity. So he was in Nerf soccer. He was the kid rolling around on the field with the t-shirt over his head or looking at the birds flying over. But it was Nerf soccer. They were five years old! And people would either laugh and try to talk about “Oh, he’s just a boy and he’s so cute” kind of thing or they would say, “You know, you really need to take him aside and explain what this is about and let him know what the rules are and what the expectations are.” I remember we were in a gymnastics class and it was a Mommy and Me class. The moms were in a line and the kids were in a line and they were going through some kind of maze. They were little kids. Meanwhile, Owen is jumping ahead and knocking things over and it was always, “Owen, where’s your mommy?” And always talking to me about “your child,” so I learned really early on to not only prepare Owen for the environment, but to prepare the environment for Owen. So I learned before I signed him up for anything to go in and say, “This is who my child is. This is what I can offer to you to help you. These are the suggestions I can

make. If you follow them, it’ll be fine.” And they were either willing to work with me or they weren’t. I certainly had people say, “No, he’s not right for this. I can’t be bothered with that.” Or in the cases where they didn’t and he would then go into some group activity, there inevitably would be a parent who would be talking and gossiping with a friend and say, “Well, who’s that kid belong to?” I just always heard it. I was the mom that was talked about. If they knew me, if they got to know me then they felt sorry for me and they were whispering. Or they didn’t bother to get to know me and they just passed their judgments about the type of parents we were. But always comments.

What is striking about this narrative is the privilege assumed by the public to comment upon a child’s behav- ior both to his mother and to one another. And what is readily available to mothers of “perfect” children appear unavailable to Jennifer. She must rely on the kindness of strangers to follow her suggestions, so that her child can participate; however, most often she hears, “He is not right for this”—an unmistakable message to Jennifer and her son that they do not belong in a public space where others expect not to be exposed to the likes of them. It is reasonable to expect that experiences such as the one Jennifer shared may later influence how a mother could respond to the suggestion that her child might benefit from a smaller teacher/student ratio in a classroom away from “other” children.

Lauren explained how she learned to resist the cultural assumptions about disability thrust upon her child, herself, and her family:

One of the challenges is that society takes all these terms that we put on children and they have attitudes about those children. And I had to learn that it didn’t matter. I had to honestly learn within myself that I couldn’t change what society thought. And I’m talking about other dentists’ wives or I’m talking about the Sunday school teacher. I’m talking about the friend next door. I couldn’t control what they thought other than to try to educate them. If people thought there was something wrong with us because we had a handicapped child, then that was their problem not our problem. There was nothing wrong with us. I had to get over the embarrassment.

Mother as outcast. Given the number of public spaces where mothers of children with disabilities may be made to feel unwelcome, it is somewhat unsurprising that exclusion also can occur within ordinary social circles of parents whose children know one another. Kathleen explained how exclu- sion extended beyond her children with ADHD and LD to herself:

You always feel that they think there’s something wrong with you . . . when you have young children, your friends are often the parents of your children’s friends and we never had the pleasure of that. Two of my three children were very poor at

16 Learning Disability Quarterly 41(1)

social skills and didn’t really have any friends when they were quite young. They would never get invited to birthday parties. If they were to have a birthday party, kids would not come. That happened on numerous occasions. And that wound up being extremely painful as a mother—unbelievable really— and also for my children. Most of the time, you just kind of feel like a second-class citizen or an outcast.

Zara corroborated Kathleen’s assertion that having a child with a disability can interrupt the natural bonding that occurs among mothers with young children:

I don’t have friends who have children who have the same type of needs that my son does. And that kind of makes me sad because one of the things that I appreciated from having my daughter [without a disability] was spending time with my daughter when she was very young with her friends and the mothers sitting around and you let the kids play.

She went on to talk about the hierarchy of acceptance that exists even among mothers of children with disabilities:

So a friend of mine said, “It must be very difficult trying to be friends with other mothers of children with disabilities because not every kid’s disabilities are the same.” And what I’ve noticed with a good friend of mine is that [long pause] we all have to deal with these degrees of acceptance of our children and their acceptance within society. So . . . as long as your kid is more accepted within society, then you are kind of at a higher level than the other parent.

Thus, Zara’s narrative suggests that the degree of a mother’s acceptance in society is related to her child’s level of accep- tance—the more severe the disability, the less integrated the mother is. Similarly, Jenna related how mothers within her social circle framed her son’s LD as something too terrible to talk about:

When I mention it to mothers who don’t have children with LD, it’s kinda like, “Oh.” They feel uncomfortable. It’s almost like saying that my child has a fatal disease. And they go, “Ooooh.” It’s a little pity sound in their voices. And they quick try to change the subject.

Discussion

At this moment in American culture when the quest for perfection in motherhood is greater than ever before, mothers of children with LD perform motherhood against the backdrop of intense pressure to ensure their children’s future success—that is, procuring the best opportunities to guarantee their children’s rightful place at the table of The Good Life. The mothers in this study point to having to contend with multiple and competing sources that claim knowledge about their children (e.g., psycholo- gists, teachers, relatives, acquaintances, friends, doctors,

strangers), thereby positioning them as human reposito- ries for societal attitudes and assumptions about disability (Valle, 2009). In other words, the moment that mother- hood goes off script, the mother of a child with disabili- ties is defined by what is “already there” in American culture.

This collection of narratives suggests the presence of multiple pressures that accompany motherhood “gone off script.” However, this is not to imply that all mothers of children with LD experience what is revealed in these sto- ries. This study, like all texts, is partial and situated. No claims are made to grand generalizations or to telling “the whole story.” Stories about what happened are not identical to what actually happened in a particular time and place. An addition is offered to our knowledge base regarding the ways in which mothers may experience parenting a child with LD, in general, and interactions with school profes- sionals, more specifically.

Limitations and Future Research

It is noteworthy that this narrative study is limited in the sense that it represents data from a select group of mothers. Such a limitation is, of course, true of nearly all research studies. Of greater concern is the minimal representation of racial/cultural diversity within the study. This work primar- ily reflects the experiences of White middle-class mothers. Direction for future research might be to compare/contrast narratives elicited from a more diverse representation of mothers.

Implications for Practice

In considering the results of this narrative study, school pro- fessionals are encouraged to move beyond a singular focus on special education policy and procedure to engage the mother across the conference table in ways that acknowl- edge and validate her experience of motherhood. We must understand not only where mothers are but also where they have been. As members of American culture, professionals must also do the work of assessing their own internalized assumptions about disability and mothers of children with disabilities. Positioning ourselves as allies rather than advi- sors will go a long way toward realizing true collaboration across the conference table.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Valle 17

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