Kathleen A. Kapp-Simon
The birth of a child with a cleft lip with or without palate (CL/P) sets in motion a variety of reactions that have significant consequences for the long-term emotional development of the child within his or her family. Although every family is unique, there is a commonality to the experience of responding to the birth of a child with special medical needs that has been frequently described in terms of shock, sadness, fear, grief, guilt, anger, and other types of psychological distress (Clifford and Crocker, 1971; Spriesterbach, 1973; Drotar et al., 1975; Richman and Harper, 1978; Brantley and Clifford, 1979; Strieker et al., 1979; Barden, 1980; Benson and Gross, 1989; Pillemer and Cook, 1989; Epperson and Meyers, 1990; Speltz et al., 1990; Carreto, 1991; Endriga et al., 1994). Despite the extensive evidence documenting the distress of the initial period following the child's birth, most families cope very well and provide an emotionally healthy environment for their child. However, children live not only in their families but also in society, and there is considerable evidence that individuals with facial differences must negotiate a plethora of personal challenges to self-esteem and social acceptance once they leave the protective environment of the family (Macgregor, 1974,1979,1990; Bull and Rumsey, 1988). Nevertheless, most individuals with CL/P are ultimately successful in coping with these difficulties and mature into productive members of society (Strauss, 2001). How families negotiate the risks associated with their child's CL/P while fostering hope and adaptation is the focus of this chapter.
Risk, Stress, and Coping
Every family that has a child with CL/P must cope with a significant number of problems and stressors. Some families cope very well, while others do less well. It is critical to identify those factors that are associated with more adaptive outcomes so that practitioners can provide appropriate guidance to families who have a child with CL/P. Eiserman (2001) pointed out that the majority of the research on children with CL/P has focused on factors associated with poor adjustment. In this chapter, we examine that research with the explicit goal of identifying factors that foster adaptation despite the very real difficulties that children and their families face. Wallander and Varni (1992) presented a model on disability, stress, and coping that provides a useful framework for discussing the factors that play an important role in the psychosocial adjustment of children with chronic medical conditions such as CL/P. Within this model, heterogeneous risk factors of the disorder, including medical risks, cognitive risks, functional risks, and psychosocial risks, are identified. The resources that families use to cope with these risks are conceptualized as resistance factors and include contingencies such as the intrinsic characteristics of the child (intrapersonal factors), family mental health, social resources and support (social-ecological factors), and stress processing. The ultimate result of the interplay between risk and resistance factors is the psychosocial adaptation of the affected individual.
Risk Factors
Medical Risks
The medical risks associated with different forms of CL/P are varied. A child with an isolated cleft of the soft palate and no known genetic etiology may have some mild feeding problems and require a single surgery to correct the palatal defect, medical management of the ears for otitis media, and monitoring by speech and audiology through early childhood. At the other end of the severity spectrum, a child with a protrusive, complete bilateral CL/P may experience significant feeding problems and require prosthetic management prior to initial lip repair. The severity of the problem may necessitate two surgeries to accomplish initial lip repair, a separate surgery for palatal repair, bone grafting of the alveolar clefts, multiple surgeries to revise the lip and nose at various times throughout childhood and young adolescence, extensive orthodontic treatment with the possibility of orthognathic surgery, ongoing follow-up and surgical interventions by the otolaryngologist, and mildly invasive speech evaluations (e.g., nasopharyngoscopy) and speech therapy. Cleft palate (CP) in the context of Robin sequence may involve other complications, such as airway compromise, that necessitate a tracheotomy in addition to the surgeries to correct the palatal defect. In yet another scenario, a child with CL/P and a genetic deletion, such as a 22qll disorder, will have the medical risks associated with CL/P as well as the potential of associated problems, including cardiac, neuromotor, seizure or developmental problems. Thus, the specific medical risks associated with a diagnosis of CL/P are heterogeneous. The greater the potential spectrum of medical problems, the greater the potential risk factors for an individual family
Functional Risks
There are also cognitive risks associated with CL/P. Although the majority of school-aged children with CL/P and CP score in the low-average range of intelligence, verbal IQ is typically lower than nonverbal IQ (Richman and Eliason, 1982). Learning disabilities, particularly in the areas of reading, language, and memory, occur in 30% to 40% of children with CL/P and at significantly higher rates in children with CP (Eliason and Richman, 1990; Broder et al., 1998). There is some evidence that the cognitive problems associated with learning disabilities may present as subtle differences in both verbal and nonverbal developmental progress during infancy and toddlerhood (Kapp-Simon and Krueckeberg, 2000; Speltz et al., 2000). Cognitive problems in more than one-third of children with CL/P represent a significant risk to long-term psychological adaptation. The presence of learning disabilities in so many children with CL/P also confounds studies of psychological adaptation. Children with learning disabilities who do not have CL/P are at risk for behavioral and emotional problems as well as deficits in social skills (Margalit, 1989; McConaughy et al., 1994; Handwerk and Marshall, 1998). Therefore, children with CL/P who also have a learning disability may be dually at risk.
Functional risks associated with CL/P that are separate from cognitive risks generally include speech articulation problems and the possibility of fluctuating conductive hearing loss secondary to otitis media. A significant number of children with a repaired CP require speech therapy to address articulation or language problems (Dalston, 1990; Peterson-Falzone, 1990; Grames et al., 2000). These problems can range from mild to severe. While mild problems may require therapy to correct, they seldom interfere with a child's ability to communicate. However, children whose problems are more severe may have significant difficulty making themselves understood to individuals unfamiliar with their speech patterns. Communication difficulties may alter the way in which family members, teachers, and peers interact with the child. In turn, communication difficulties may have a significant impact on the child's ability to master normal developmental tasks, including personal independence, academic competence, and reciprocal play.
Most children with CP experience multiple episodes of otitis media with effusion, resulting in frequent disruptions of auditory input due to fluctuating mild to moderate conductive hearing loss (Stool, 1990). A number of studies have suggested that these changes in hearing sensitivity may affect the development of language skills and/or reading skills when they occur during the formative years of language learning (Peters et al., 1994; Roberts et al., 1995; Johnson et al., 2000; Kindig and Richards, 2000). While the findings have been inconsistent, the presence of repeated otitis media with effusion with resultant conductive hearing loss is a significant risk factor for children with CL/P.
Psychosocial Risks
Children with CL/P experience a significant number of psychosocial risks, including multiple medical appointments and evaluations, feeding difficulties, repeated surgeries, differences in appearance resulting in possible stigmatization, and the possible, need for early intervention programs or special therapies (e.g., speech therapy). Similar to other children, children with CL/P are subject to major life stress, such as the birth of a sibling, a family move, parental divorce, the death of a close relative, or chronic school failure. Likewise, psychosocial stress is part of the daily hassles that all children face, including children with CL/P. These daily hassles can be as mild as being scolded for forgetting homework or more significant, as in peer teasing. Regardless of the severity, however, these daily hassles increase the stress that children feel and contribute to the overall psychosocial risk to which children with CL/P are subjected.
The risks identified above represent areas of potential vulnerability for children with CL/P. The responses to these risks and the methods of coping that develop play a significant role in a child's ability to adapt. A number of researchers have suggested that children with chronic medical conditions are at about twice the risk for problems of maladjustment as their healthy peers (Rutter et al., 1970; Pless and Roghmann, 1971; Wallander et al., 1988). Children with CL/P fall into the same risk rate (Speltz et al., 1997; Kapp-Simon and Dawson, 1998). However, despite the known risks and the increased rate of psychosocial problems for individuals with CL/P, many children are happy and well adjusted and many adults are satisfied with themselves, display good emotional adjustment, and make a significant contribution to society (Strauss, 2001; Eiserman, 2001). What accounts for this differential adaptation? How is it that children faced with a similar set of risks can have such different outcomes?
Resistance Factors
Murphy and Moriarty (1976), in their groundbreaking book Vulnerability, Coping, & Growth: From Infancy to Adolescence, describe the resilience of a child in the following terms:
a child is…an adapting, plastic individual finding a way to come to terms with changing pressures and opportunities. The latter are experienced individually and selectively as each child's strengths and vulnerabilities make a given situation a source of threat, deprivation, or satisfaction.…The adaptational style, then, is a more or less flexible attunement between the range of resources and limitations of the child and the quality of the environmental pressures and opportunities, (p. 166)
As noted earlier, Wallander and Varni (1992) postulate a similar set of resources as moderator variables, which they call “resistance factors.” Broadly speaking, they classify these resistance factors as intrapersonal characteristics, social-ecological characteristics, and the way in which stress is processed by the child and family members.
Intrapersonal Factors
Intrapersonal factors include characteristics intrinsic to the individual, such as temperament, well learned characteristics, such as social skills and evaluation of personal competence and self-esteem/self concept. Other factors could also be included under the rubric of intrapersonal factors; however, the current discussion focuses on these three.
Temperament
Temperamental variables are stable characteristics that identify individual differences in children (Thomas and Chess, 1957, 1980; Thomas et al., 1961, 1963). Buss and Plomin (1984) identified three broad constructs that encompass the major dimensions of temperament: emotionality, how a child responds to distress, fear, or anger; activity level, a child's ability to attend or the degree of cognitive distractibility/persistence present; and sociability, a child's tendency to approach or avoid new people or situations. While temperamental characteristics are generally thought to be immutable, in some cases having a child's ability a genetic basis (Kagan et al., 1987, 1988; Kagan, 1994), they also interact with environmental demands. For example, a child who is inhibited and becomes extremely fearful during medical exams is more likely to react positively if the parent is calm and supportive and the medical staff provides adequate time to become comfortable with the situation than if the adults are quick to make demands and intolerant of the child's justifiable need to acclimate to the exam.
Children with CL/P frequently demonstrate temperamental characteristics consistent with increased anxiety (emotionality), behavioral inhibition (activity level), and social withdrawal (sociability) (Richman, 1976, 1978b, 1998; Richman and Harper, 1978; Richman and Millard, 1997; Kapp-Simon and Dawson, 1998). While it is unlikely that a cautious child will learn to become exuberant or predominantly extroverted, parents and other adults can develop strategies for supporting the inhibited child that foster more adaptive interactions. One basis for that support is encouragement (see Nelsen et al., 1998a, pp. 199-214 for further discussion of this concept). A “slow-to-warmup child” needs adults to believe that he or she can warm up. When that child is faced with an unfamiliar peer or potentially challenging situation, parents can help if they are able to communicate to their child that they believe the child can be successful. Additional information on responding to temperamental differences in children is provided by Nelsen et al. (1988b).
Social Skills
While temperament is often considered an intrinsic characteristic of individuals, the second intrapersonal characteristic, social skills, includes behaviors that can be taught. Social skills are those behaviors that enhance social interaction. Regardless of temperament, children can learn specific skills that enable them to initiate and maintain social interactions, modulate their emotions, provide social reinforcement to their peers, and solve social problems.
Children with CL/P and other facial differences have been identified as being at risk for difficulties in social relationships. Macgregor (1990) identified social encounters as the most stressful aspect of having a facial disfigurement. In an observational study, Kapp-Simon and McGuire (1997) found that children with craniofacial conditions initiated and received fewer social approaches than their school peers without facial differences and that the strategies that such children used to engage their peers were less effective and more tentative than those used by the comparison group. Macgregor (1990) suggested that the difficulties involved in social encounters occur for individuals with craniofacial conditions because the rituals, typical behaviors, and rules of social conduct are altered when one of the participants is facially disfigured. Difficulties maintaining culturally appropriate interaction sequences are difficult for both the individual with a facial difference and the individual without disfigurement. The nondisfigured participant feels awkward and unsure about how to relate to a person with facial scars. This awkwardness is communicated nonverbally through body movements, postural and facial changes, head positioning, eye movements, gestures, and social distance. Paralinguistic communication, in the tone and pitch of voice, rate of speech, hesitations, and emotional overtones, can also contribute to the discomfort of the situation. In addition, individuals with craniofacial conditions are frequently confronted with impolite stares or intrusive questions. To be successful in this environment, the individual with facial differences must develop coping strategies. However, those strategies that both children and adults report using quite frequently, including feigning unawareness of the other's stares, staring back, making a defiant comment, or withdrawing in hopelessness, are not particularly effective and are more likely to truncate the encounter than to promote interaction.
Learning effective social skills can have lifelong benefits. Research has demonstrated that social deficits can have implications for personal adjustment at later ages (Parker and Asher, 1987). The benefits of positive social skills have also been demonstrated in studies of adjustment involving children with craniofacial conditions. In longitudinal research, the degree of friendliness displayed by preschool children with craniofacial conditions has been associated with better social adjustment and fewer behavioral problems at school age based on teacher observations (Krueckeberg et al., 1993; Krueckeberg and Kapp-Simon, 1997). In adolescence, parents report that children who have better social skills show fewer emotional or behavioral adjustment problems and are less likely to be socially inhibited or withdrawn (Kapp-Simon et al., 1992).
The social skills needed for effective interaction will vary depending on the age of the child. However, even a preschool child can learn to respond to a question about scarring from the repaired cleft lip in a friendly and effective manner. Parents should be encouraged to provide their children with a vocabulary that they can use to describe the condition, and the children should practice answering questions. Parents can also model appropriate behavior by the way they respond to questions in their child's presence. If families are able to use the same tone of voice and positive emotional energy when talking about their child's cleft as they do when they talk about the child's blue eyes or black curly hair, they will communicate that the cleft is simply another valued part of the child's person. This matter-of-fact approach enables the child to believe that the cleft need not be a source of embarrassment or shame.
As the child matures, more specific skills may be needed. There are a variety of programs geared to the development of social skills for preschool and elementary school students (Cartledge and Milburn, 1980; Coie, 1985; Schneider and Bryne, 1985; Goldstein, 1988; Matson and Ollendick, 1988). Kapp-Simon and Simon (1991) provided a model for social skills training with adolescents who have special needs. For the child with CL/P, specific attention should be paid to skills that encourage good pragmatic communication (eye contact, tone of voice, social distance) as well as specific skills for entering and maintaining conversations, anxiety management, and empathy. The skill of empathy is particularly important for children who are anxious or self-conscious. An empathic response encourages the child to think about the feelings and experiences of the person to whom he or she is speaking rather than to focus on his or her own concerns.
Direct teaching of social skills has been found to be effective. Using a pre-post design, McGuire (1990) evaluated the social skills of 13 children with craniofacial conditions before and after participation in a social skills training group and compared the results with those of seven children who did not participate in the group. The young adolescents who had participated in the social skills group significantly increased the frequency with which they initiated conversations with peers and the frequency with which these contacts became actual conversations. For group participants, these skills increased to be equivalent to the nonclinical group, while they remained unchanged for the comparison subjects with craniofacial conditions.
Robinson et al. (personal communication) also reported increased social competence for participants with craniofacial conditions after a 2-day social skills training workshop sponsored by Changing Faces in England. Only anecdotal reports regarding the improvement in social skills were included in the results; however, reported anxiety decreased significantly after group participation.
Self-Concept
A third intrapersonal consideration that is important when discussing resistance factors is self-concept. According to Kliewer and Sandier (1992), positive self-esteem may enhance an individual's appraisal of a stressor; i.e., a child may view the failure to achieve a particular goal as a challenge to try harder rather than as evidence of a lack of competence. Harter (1985) identified five separate areas of competence believed to be critical to self-evaluation by children and to contribute to overall self-esteem: scholastic achievement, conduct/behavior, physical appearance, athletic achievement, and social acceptance. Harter (1985) described self-esteem as a global judgment that assesses the degree to which the child likes him- or herself, is satisfied with the way he or she is living life, and feels good about him- or herself. Children who believe that they are competent in the classroom, in the orchestra, on the athletic field (regardless of level to play), or in terms of their ability to interact effectively with others are more likely to believe in themselves. Most of their emotional energy can be directed toward continued success in their chosen area. Cleft-related concerns can be relegated to the inconvenience of having to attend medical appointments or to consider surgeries.
Social-Ecological Support
Children with CL/P receive support from a variety of sources in their environment. To focus on those aspects of the social environment that are common to most children, the following sources of social-ecological support are discussed: family adaptation, financial resources, medical care, and the school environment.
Family Adaptation and Resources
Parental Adjustment
Children with CL/P are born into many different types of family. Prior to the child's birth, some families may be doing well: the marital relationship is stable, and the child is anticipated with eagerness and joy. Other families may be getting along reasonably well: there may be some stresses, possibly mild marital discord, financial problems, or problems with another child. The current pregnancy may be viewed with mixed emotions, though in general the family looks forward to a new addition. A third group of families may not cope particularly well prior to the pregnancy. In some cases, the pregnancy is unplanned; in others, it is planned as a way of “saving the marriage.” Marital discord or some other form of significant stress, e.g., job loss or illness of a grandparent, may be present.
The family's level of adaptation, cohesion, and general emotional health will influence its ability to cope with the birth of a child with CL/P (Nash, 1995). For each family, regardless of prior level of functioning, the birth of a child with CL/P marks a time of temporary crisis. Most families anticipate a healthy baby, and the presence of the cleft disrupts their expectations (Endriga and Kapp-Simon, 1999). Clinical experience demonstrates that the family's ability to navigate that crisis will be related to the parents' ability to work through their own emotional responses to this crisis and support each other. Each parent will experience emotional distress, but the two parents may not be at the same stage at similar times. For example, one parent may be dealing with depressed feelings, while the other is angrily searching for something or someone to blame. The ability of the parents to recognize the validity of their own feelings as well as of those of their partner, even if they differ from their own, is critical. Acknowledgment of differing emotional responses is the first step toward providing mutual support or, if indicated, seeking outside support to handle intense emotional distress. There is evidence from the broader literature on chronic illness that mothers who experience greater marital satisfaction and broader family and psychosocial support demonstrate healthier mental and physical adjustment (Wallander et al., 1989).
Each parent brings unique abilities to the task of rearing a child with special medical needs. It behooves parents to recognize each other's strengths. For example, one parent may be more competent at negotiating medical terminology and treatment plans, while the other is able to support the child more effectively through an invasive medical procedure. Mutual and respectful acknowledgment of the importance of different types of strength will support the marital relationship and provide the child with optimal care.
Mother-infant attachment may not be affected as negatively as previously thought by the presence of CL/P (Hoeksma and Koomen, 1991; Speltz et al., 1997; Maris et al., 2000). Based on attachment theory, maternal responsiveness is more important than the characteristics of the infant in determining the quality of the mother-infant relationship. The finding that infants with CL/P are as securely attached to their mothers as infants without CL/P is encouraging. These findings suggest that many mothers do overcome the challenges that are a real part of raising a child with CL/P and are able to nurture the infant in an effective and satisfying manner. The characteristics most commonly seen in those mothers whose children were securely attached included belief in their ability to meet their child's needs, satisfaction in their role as parent, and an ability to realistically acknowledge the stress of their current situation (Speltz et al., 1997).
Parents can build on the initial positive attachment that typically develops between mother and infant by ensuring that they have specific parenting skills that enable them to provide emotional support, impart positive discipline, and promote social interaction skills for their child. In at least one study, parents of 2- and 3- year-old children with CL/P reported feeling less competent as parents than other study participants (Speltz et al., 1990), thus highlighting the need for focus on this area. Parents can be encouraged to increase their parenting competence by learning specific parenting skills. This need is supported by research. For example, speaking about the needs for parenting skills, Gottman (1997) states the following:
In my research, I discovered that love by itself wasn't enough. Very concerned, warm, and involved parents often had attitudes toward their own and their children's emotions that got in the way of them being able to talk to their children when they were sad or afraid or angry. But while love by itself was not enough, channeling that caring into some basic skills that parents practiced as if they were coaching their children in the area of emotion was enough. The secret lay in how parents interacted with their children when emotions ran hot. (p. 16)
Gottman outlines a five-step procedure for “emotion coaching,” a process of discipline that provides a sound foundation for parenting skills across a large variety of situations. Parents are taught to become aware of their child's emotions, to recognize that times of emotional upset are also moments of potential intimacy with their child, to respond with empathy to their child's distress, to help the child label emotions with words that are appropriate to the age of the child, and to set limits while helping their child solve the problem. Other parenting programs teach similar skills (Gordon, 1970; Nelsen, 1996; Faber and Mazlish, 1998). Consistent use of positive parenting skills will model appropriate social interactions for the child with CL/P and provide the child with the sense of security that comes from knowing that important adults care enough to set reasonable limits.
Social Support
Social and emotional support for parents of children with CL/P is essential, particularly during the first years of the child's life. This support can be provided by extended family, friends, and, for families who choose them, parent-support groups. Many parents seek the help they need, and both Speltz et al. (1990) and Krueckeberg and Kapp-Simon (1993) found that parents of young children with craniofacial conditions did not differ in terms of their social networks or the support they received. This differs from reports by Benson et al. (1991) and Bradbury and Hewison (1994). Benson et al. (1991) found that families of children with craniofacial conditions reported less social support and were less satisfied with their social support networks. Bradbury and Hewison (1994) reported increased parental concern about allowing their infants with visible differences to be seen in public, particularly when their own parents had difficulty adjusting to the child's cleft. Demonstrating the links between various types of resistance factors, Benson et al. (1991) found that parents' satisfaction with social support was related to their child's social competence. Families in which the children with craniofacial conditions displayed more age-appropriate social skill development were likely to have a more extensive social network and experience more satisfaction from those relationships.
Participation in a parent-support group or an online chat room geared to families who have a child with CL/P can be another source of social support for some families. Parents often find it uplifting to speak with another family that has experienced some of the same stages of treatment that they anticipate for their child. As the children mature, they, too, enjoy getting together with others who have had to handle similar peer situations or surgeries. The Cleft Palate Foundation, About Face U.S.A., About Face International, and Wide Smiles provide resources for families looking to make contact with others who have a child with a condition similar to that of their child (see Appendix for Internet addresses).
Financial Resources
Adequate financial resources, including steady employment and medical insurance, are important. The birth of a child with CL/P creates a financial strain for most families (see Waitzman et al., 1994, for an estimate of costs). Even with appropriate medical insurance, there are many needed services that are not adequately covered (Sheils and Wolfe, 1992; Waitzman et al., 1994). Often, tremendous amounts of time need to be devoted to tracking insurance claims, making phone calls, and writing letters regarding denials. With health-maintenance organizations or preferred provider organizations, families struggle to coordinate care and may worry that the practitioners within their provider network do not have sufficient experience in treating CL/P (Fox and McManus, 1998). The financial strain becomes greater as economic need increases because so many of the working poor do not have medical insurance and do not qualify for public assistance.
Especially during the early years of the child's life, multiple medical appointments and surgeries require absences from work. For many families, these absences entail loss of pay or use of vacation time. In either case, family members pay a price to provide appropriate care for their child with CL/P.
In the United States, insurance coverage is generally tied to a parent's job. If that parent loses the job or changes jobs voluntarily, the insurance will no longer be available to the child with CL/P. For some children, care for cleft-related treatment will never again be covered by insurance due to a clause in the family's new insurance excluding preexisting conditions; for others, coverage will be provided only after a waiting period of up to 2 years. Insurance expenses can also create stress for a family when the parent works for a smaller firm, where extraordinary expenses from one member can cause an insurance carrier to drop an account rather than bear the expense of the child with CL/P (see Perrin et al., 1992, for a discussion of healthcare needs for children with chronic illness). Clinical experience demonstrates that families frequently forgo treatment for their child that they feel is less important, such as dental care, speech therapy, or psychological services, when insurance coverage is inadequate. In each case, postponement of, or a decision not to provide, needed care in those areas will increase the child's risk for longterm treatment failure. Provision of these essential services can increase the child's level of invulnerability and thus improve long-term adaptation, the ultimate goal of CL/P-related treatment.
Medical Care
Coordinated, family-centered care is a critical factor in the long-term adaptation of children with CL/P. The American Cleft Palate-Craniofacial Association (ACPA) (1993) provides information on the treatment needs of children with CL/P or other craniofacial conditions. The “Standards of Team Care” (Strauss and ACPA Team Standards Committee, 1998) identifies the makeup of a CL/P or craniofacial team in terms of specialists who should be included on the medical team and the services that should be provided. It is the recommendation of the ACPA that all children with any type of CL/P or craniofacial condition be provided with medical care within the framework of a medical team that meets the standards established through these documents.
Coordinated, multidisciplinary team care for children with CL/P provides many necessary safeguards for the children and their families. The experience of team members with CL/P helps to ease the anxiety that a family with a newborn feels as they realize that the team members understand the condition and can quickly address their initial concerns. Issues such as feeding problems, timing of corrective surgery, and long-term treatment needs can be readily addressed by appropriate team members so that the feelings of crisis are diminished and the family is able to move in the positive direction of intervention. The team is able to provide information about long-term expectations of care that can instill hope, an important ingredient for the success of the child's treatment. Finally, team care allows for coordinated efforts. When indicated, pressure equalizing tubes can be inserted at the time of lip or palate repair, rather than as a separate surgery. Unnecessary secondary surgeries on the palate can be avoided if the speech pathologist is allowed to determine whether speech articulation errors are related to velopharyngeal incompetence or some other cause (Sloan, 2000).
As the child matures, team members work the with family to identify treatment priorities. The family and, when old enough, the child with CL/P are encouraged to voice their concerns. Allowing the child and parents to play a role in the determination of treatment priorities and, when feasible, the timing of interventions empowers the family members. Families do not always make the same decisions that the treatment team members would make under similar circumstances. The role of the team is to present the family with options and then to support the family's decision even when that would not be the decision of the treatment team. This empowerment enables families to be more accepting of the treatment options available as well as the final outcome of the treatment they choose. Satisfaction with treatment outcomes, particularly in terms of appearance, is an important factor. In the study of adolescents with CL/P by Richman et al. (1985), self-reported satisfaction with appearance (not objective ratings of appearance) was associated with level of behavioral inhibition. The greater the level of satisfaction, the less behavioral inhibition observed.
Team care also affords families the opportunities to obtain the psychosocial support they require. Team members generally include a nurse, psychologist, or social worker who is sensitive to the emotional needs of families. These team members specifically assess the strengths of families and work with them to foster the best emotional environment for the child. In addition, psychosocial staff are responsible for assessing the emotional and social adjustment of the child, supporting child and parents, helping to develop parenting skills, providing preparation for invasive medical procedures or surgery, and screening for developmental and delay learning problems (American Cleft Palate-Craniofacial Association, 1993). This type of psychosocial support allows for early identification of areas of concern and development of a treatment plan to address them.
School Support
Children spend a good percentage of their time in school. The school environment is a critical forum in which children are afforded the opportunity for both intellectual and social learning. Children with CL/P face a number of risks within the school environment. Richman (1978a) found that teachers underestimated the intellectual abilities of children with CL/P compared with actual ability, particularly children with more significant scarring. This finding is consistent with other literature that has documented a relationship between cleft-related impairments (e.g., oral-facial differences or speech impairment) and judgments of inferior intellectual functioning (Clifford and Walster, 1973; Shaw and Humphreys, 1982).
Nash (1995) assessed adults with CL/P and found that the vast majority (80.2%, n = 174) reported being teased about their cleft when they were children. The finding of increased withdrawal and inhibition at school vs. parental report of the same behaviors at home (Richman, 1976, 1978b) suggests that the stress of social interactions and perhaps competition in the classroom has a negative effect on social adjustment and may even affect achievement. Further support for excessive inhibition of impulse and concern over interpersonal relationships was seen in a study of adolescents using the Minnesota Multiphasic Personality Inventory (Harper and Richman, 1978). In this study, females with CL/P displayed greater dissatisfaction with their life situation, which was interpreted to relate to the greater emphasis on physical appearance in females, particularly during adolescence. Kapp (1979) came to similar conclusions when examining self-concept of adolescents with CL/P.
In addition to the social/emotional concerns that children of school age face, there is the real concern regarding academic difficulties. The rate of learning disabilities for children with CL/P is significantly higher than that of the general population (Broder et al., 1998). As noted previously, these children are doubly at risk and may face social difficulties and assaults on self-esteem from either front.
Despite the risks, the school can become a source of social support for child and family. Teachers can be educated about the multiple risks involved in having CL/P. Education can increase the sensitivity of the teacher to the behavior of all of the children. The goal would be for the teacher to set up a social environment in which each child's uniqueness would be respected and honored. School programs such as the About Face School Program, “Unwrapping the package: dispelling myths about unusual appearances” (About Face, 1996) or “Bully-proof your school” (Short-Camilli et al., 1999) can be used in the classroom to increase the sensitivity of children to the importance of accepting differences in each other. The extent to which the child with a cleft would be singled out during such discussion is something that should be agreed upon by the parents and teacher in consultation with the child. Families and children differ in their level of comfort in discussing issues related to CL/P in a public forum. However, testimonials that advocate the benefits of such open discussion are certainly found in the parent networks (e.g., Ability Online Support Network, About Face International, About Face U.S.A., Let's Face It, Wide Smiles). Some children enjoy and gain esteem from presenting information about CL/P and their personal history to their classmates using pictures and medical terminology.
Education of the teacher regarding the ways in which teasing occurs in a particular classroom is also critical. Teachers are often unaware of the extent to which a child is victimized because the taunting or bullying takes place out of view and earshot. While the ideal is for a child to address the issues of teasing independently through improved social skills, there are occasions when the adults must take charge to bring about changes in the peer atmosphere (Nash, 1995). When a parent has worked to help the child develop a variety of response strategies to the teasing but the teasing persists, action at the school level is needed. This intervention may require bringing in a counselor or social worker to help the students break the cycle of teasing that has developed (see Wilson, 2001, for information on additional resources that can be used by parents, counselors, or teachers).
The school can also address the special educational needs of those children with CL/P who also have a learning disability. Early memory problems (e.g., rapid naming or verbal memory, such as an inability to label colors, recite the ABCs, or count accurately) may be indicators of potential learning disabilities for many children with CL/P (Buckenburger, 1991; Richman, 2000). Other children, particularly those with CP, may have more pervasive difficulties with language (Richman and Eliason, 1984; Richman et al., 1988; Richman, 1990). Teachers should be made aware of these indicators so that appropriate early intervention can be provided.
Stress Processing
The experience of CL/P clearly increases the number and types of stressors experienced by family and child. Another variable that affects outcome in terms of child adaptation relates to the cognitive appraisal and coping strategies that families adapt in response to those stressors. Cognitive appraisal refers to the family's perception of their ability to handle the stresses associated with their child's condition. Four broad areas receive focus: the family's perception of their ability to deal with the child's medical problems and related symptoms, the family's perception of their ability to maintain the child's emotional well-being, parent's ability to maintain their own emotional well-being, and the parent's ability to maintain the well-being of other children in the family (Sloper, 2000). Coping strategies define the ways in which families respond to stress. A variety of conceptual models have been developed to examine this process. However, Compas et al. (1992) suggest that these models reflect two broad styles of coping: the first focuses on the problem itself, whether that be some aspect of the person, the event, or a combination of the two; and the second focuses on the need to cope with the distressful emotions associated with the event.
There have been no direct studies focusing on stress processing in families whose children have CL/P. Consequently, the information discussed here is drawn from the broader area of research involving children with other types of chronic illness.
Few studies have actually looked at cognitive appraisal as an independent factor associated with adjustment. However, Kazak and Barakat (1997) suggested that perception of illness-related stress is related to adjustment problems. This relationship was empirically demonstrated in the research of Sloper (2000), involving families whose children had been diagnosed with cancer. She found that parents' appraisal of the strain of the illness combined with their confidence in their ability to handle the strain was related to parental distress. Parental confidence in their ability to cope combined with family cohesion were factors associated with less emotional distress for these families.
Positive, problem-focused coping strategies (making a plan and following through with it), as opposed to coping strategies that encompass negative self-criticism, were more effective for mothers in the Sloper (2000) study. Similar findings have been found in other studies where it has been demonstrated that families of children with chronic illness do better when they choose an active, problem-focused coping style (Mullins et al., 1991; Miller et al., 1992a; Thompson et al., 1993; Davis et al., 1998).
Clinical experience provides anecdotal information regarding strategies that families use to help their children cope effectively with CL/P team consultations and surgeries. From an appraisal standpoint, parents acknowledge that cooperating with the various assessments that are part of the team consultation can be stressful for their child. Parents who are effective at supporting their children give the child the message that they believe he or she can cooperate. These parents are able to establish an expectation that the child will talk during the speech exam and will open his or her mouth during the oral exam without making the interaction a power struggle. Some families find success by having their child practice cooperating for the various medical exams using appropriate play medical equipment. The child can be afforded the opportunity to “examine” a parent's or cooperative sibling's mouth and ears as well as “play doctor” with their dolls or stuffed animals. Stressful events, e.g., having blood drawn prior to surgery, can be handled through strategies such as distraction, which encourage the child to think about something else (e.g., count, sing a song, or imagine themselves in a pleasant place) during the stressful procedure or relaxation coupled with positive self-talk (Miller et al., 1992b). The team social worker or psychologist can be accessed by families to help them develop strategies that work most effectively for their child.
Another area of potential stress in families whose children have CL/P is the child's social acceptance, particularly when facial scarring or speech problems are present. Though not specifically assessing cognitive appraisal, the findings of Pope and Ward (1997) on factors associated with peer social competence in preadolescents with craniofacial conditions can be interpreted within this context. They found a relationship between parental worry about their child's social adjustment and the child's social competence. Children whose parents were concerned about them but took active steps to solve the children's social difficulties, such as helping to arrange play dates and encouraging social contact, displayed greater adjustment than children whose parents demonstrated high worry and anxiety about the problem with little or no effective action. In this context, parents or school counselors and social workers can help children develop effective prosocial skills. As described earlier in this chapter, teaching children to approach their peers in a friendly manner, helping them to develop strategies for handling questions about facial scarring or speech difficulties, and teaching them how to respond to bullies are social skills that will facilitate better adjustment.
Enabling families to share their successes can also enhance effective coping. Eiserman (2001) suggests that efforts need to be made to provide families with optimism and models of positive outcome:
The optimum outcome for families like this was a kind of peace of mind and adaptation that comes when individuals and families accept their circumstances as something: to work with, not against; to help frame their lives, not entirely, but partly; and, which can provide fuel for creating the dreams and hopes they have for themselves and their families, (p 6)
To this end Eiserman (2001) includes a number of vignettes that describe the positive expectations of parents and the adaptive outcomes of adults with the hope of providing models of adaptation for others to emulate.
Conclusions
In this chapter, I have outlined factors of stress and resistance that interact to moderate adaptation in children with CL/P. Research on children has provided ample evidence of the complicated and multidirectional effects of stress and support on long-term adaptation (Dubois et al., 1992). Children with CL/P face a multitude of challenges specific to the cleft diagnosis, yet they also must cope with the complex set of stresses and challenges to adaptation that are a natural part of childhood. The goal of this chapter was to challenge us to think about interventions and supports that foster optimal development. Children with CL/P have the potential to be significant contributors to society. It behooves us to teach them how to channel the emotional energy required to cope with the variety of challenges inherent in living with CL/P into productive activity. Families should be presented with the expectation that their child with CL/P can cope and actively contribute to society at every stage of development, whether that is in the classroom or in the workforce.
References
About Face (1996). Unwrapping the Package: Dispelling Myths about Unusual Appearances. Toronto: About Face.
American Cleft Palate-Craniofacial Association (1993). Parameters for evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies. Cleft Palate Craniofac J 30(Suppl 1): 4.
Barden, RC (1980). The effects of craniofacial deformity, chronic illness, and physical handicaps on patient and familial adjustment: research and clinical perspectives. In: Advances in Child Clinical Psychology, edited by B Lahey and A Kazdin. New York: Plenum, pp. 343–375.
Benson, BA, Gross, AM (1989). The effect of a congenitally handicapped child on the marital dyad: a review of the literature. Clin Psychol Rev 9: 747–758.
Benson, BA, Gross, AM, Meeser, SC, et al. (1991). Social support networks among families with craniofacial anomalies. Health Psychol 10: 252–258.
Bradbury, ET, Hewison, J (1994). Early parental adjustment to visible congenital disfigurement. Child Care Health Dev 20: 251–266.
Brantley, HT, Clifford, E (1979). Cognitive, self-concept, and body image measures of normal, cleft palate, and obese adolescents. Cleft Palate J 16: 177–182.
Broder, HL, Richman, LC, Matheson, PB (1998). Learning disabilities, school achievement, and grade retention among children with cleft: a two-center study. Cleft Palate Craniofac J 35: 127–131.
Buckenburger, L (1991). Learning Disabilities in the Cleft Palate Population. Chicago: DePaul Univ. Dissertation.
Bull, R, Rumsey, N (1988). The Social Psychology of Facial Appearance. New York: Springer-Verlag.
Buss, AH, Plomin, R (1984). Early Developing Personality Traits. Hillsdale, NJ: Lawrence Erlbaum.
Carreto, V (1991). Maternal responses to an infant with cleft lip and palate: a review of the literature. Matern Child Nurs J 10: 197–205.
Cartledge, G, Milburn, J (eds) (1980). Teaching Social Skills to Children. New York: Pergamon.
Clifford, E, Crocker, EC (1971). Maternal responses: the birth of a normal child as compared to the birth of a child with a cleft. Cleft Palate J 8: 298–306.
Clifford, E, Walster, T (1973). The effect of physical attractiveness on teacher expectation. Sociol Educ 46: 248–253.
Coie, JD (1985). Fitting social skills intervention to the target group. In: Issues in Assessment and Intervention, edited by BH Schneider, KH Rubin, and JE Ledingham. New York: Springer-Verlag, pp. 651–657.
Compas, BE, Worsham, NL, Ey, S (1992). Conceptual and developmental issues in children's coping with stress. In: Stress and coping in child health, edited by AM LaGreca, LJ Siegel, JL Wailander, and CE Walker. New York: Guilford Press, pp. 7–24.
Dalston, RM (1990). Communication skills of children with cleft lip and palate: a status report. In: Multidisciplinary Management of Cleft Lip and Palate, edited by J Bardach and HL Morris. Philadelphia: Saunders, pp. 746–749.
Davis, CC, Brown, RT, Bakeman, R, Campbell, R (1998). Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol 23: 219–228.
Drotar, D, Baskiewisz, A, Kennell, I, Klaus, M (1975). The adaptation of parents to the birth an infant with a congenital malformation: a hypothetical model. Pediatrics 56: 710–717.
DuBois, DL, Felner, RD, Brand, S, et al. (1992). A prospective study of life stress, social support, and adaptation in early adolescence. Child Dev 63: 542–557.
Eiserman, W (2001). Unique outcomes and positive contributions associated with facial difference: expanding research and practice. Cleft Palate Craniofac J 38: 236–244.
Eliason, MJ, Richman, LC (1990). Language development in preschoolers with cleft. Dev Neuropsychol 6: 173–182.
Endriga, M, Kapp-Simon, KA (1999). Psychological issues in craniofacial care: state of the art. Cleft Palate Craniofac J 36: 3–11.
Endriga, MC, Speltz, ML, Mouradian, W (1994). Change in maternal stress during infancy. Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, Toronto Canada, April 1994.
Epperson, MJ, Meyers, BJ (1990). Mother-infant feeding interactions with cleft lip/palate infants: disparity between observations and mother's reports. Presented at the International Conference on Infant Studies, Montreal, Canada, April 6-8, 1990.
Faber, A, Mazlish, E (1998). Siblings Without Rivalry, exp ed. New York: Avon.
Fox, HB, McManus, MA (1998). Improving state Medicaid contracts and plan practices for children with special needs. In: The Future of Children: Children and Managed Care, edited by RE Behrman. David and Lucile Packard Foundation, Los Altos, CA: 8: 105–118.
Goldstein, AP (1988). The Prepare Curriculum: Teaching Prosocial Competencies. Champaign, IL: Research Press.
Gordon, T (1970). P.E.T. Parent Effectiveness Training. New York: Peter H. Wyden.
Gottman, J (1997). Raising an Emotionally Intelligent Child. New York: Fireside.
Grames, LM, Marsh, JL, Pilgram, T, et al. (2000). Speech therapy outcome and duration in children with cleft palate with or without cleft lip. Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, Atlanta, Georgia, April 12-14, 2000.
Handwerk, ML, Marshall, RM (1998). Behavioral and emotional problems of students with learning disabilities, serious emotional disturbance, or both conditions. J Learn Disabil 31: 327–338.
Harper, DC, Richman, LC (1978). Personality profiles of physically impaired adolescents. J Clin Psychol 34: 636–642.
Harter, S (1985). Processes underlying the construction, maintenance and enhancement of the self-concept in children. In: Psychological Perspectives on the Self, Vol. 3, edited by J Suls and A Greenwald. Hillsdale, NJ: Lawrence Erlbaum.
Hoeksma, JB, Koomen, H (1991). Development of Early Mother Child Interaction and Attachment. Amsterdam: Pro Lingua.
Johnson, DL, Swank, PR, Owen, MJ, et al. (2000). Effects of early middle ear effusion on child intelligence at three, five, and seven years of age. Pediatr Psycholog 25: 5–13.
Kagan, J (1994). On the nature of emotion. In: The Development of Emotion. Monographs of the Society for Research in Child Development, Vol. 59, edited by NA Fox. Chicago: U of Chicago, p. 240.
Kagan, J, Resnick, JS, Snidman, J (1987). The physiology and psychology of behavioral inhibition in young children. Child Dev 58: 1459–1473.
Kagan, J, Resnick, JS, Snidman, J (1988). Biological bases of childhood shyness. Science 240: 176–171.
Kapp, K (1979). Self-concept of the cleft lip or palate child. Cleft Palate J 16: 171–176.
Kapp-Simon, KA, Dawson, P (1998). Behavior adjustment and competence of children with craniofacial conditions. Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, Baltimore, Maryland, April 24, 1998.
Kapp-Simon, KA, Krueckeberg, SM (2000). Mental development in infants with cleft lip and/or palate. Cleft Palate Craniofac J 37: 65–70.
Kapp-Simon, KA, McGuire, DE (1997). Observed social interaction patterns in adolescents with and without craniofacial anomalies. Cleft Palate Craniofac J 34: 380–384.
Kapp-Simon, KA, Simon, DJ (1991). Meeting the Challenge: A Social Skills Training Program for Adolescents with Special Needs. Chicago: University of Illinois Press.
Kapp-Simon, KA, Simon, DJ, Kristovich, S (1992). Self-perception, social skills, adjustment, and inhibition in young adolescents with craniofacial anomalies. Cleft Palate Craniofac J 29: 352–356.
Kazak, AE, Barakat, LP (1997). Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. J Pediatr Psychiatry 22: 749–758.
Kindig, JS, Richards, HC (2000). Otitis media: precursor of delayed reading. J Pediatr Psychol 25: 15–18.
Kliewer, W, Sandier, IH (1992). Locus of control and self-esteem as moderators of stressor-symptom relations in children and adolescents. J Abnorm Child Psychol 20: 393–341.
Krueckeberg, SM, Kapp-Simon, KA (1993). Effect of parent factors on social skills of preschool children with craniofacial anomalies. Cleft Palate Craniofac J 30: 490–496.
Krueckeberg, SM, Kapp-Simon, KA (1997). Longitudinal follow-up of social skillls in children with and without craniofacial anomalies. Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, New Orleans, Louisiana, April 7-12, 1997.
Krueckeberg, SM, Kapp-Simon, KA, Ribordy, SC (1993). Social skills of preschoolers with and without craniofacial anomalies. Cleft Palate Craniofac J 30: 475–481.
Macgregor, FC (1974). Transformation and Identity: The Face and Plastic Surgery. New York: Quadrangle.
Macgregor, FC (1979). After Plastic Surgery: Adaptation and Adjustment. Brooklyn, NY: Bergin.
Macgregor, FC (1990). Facial disfigurement: problems and management of social interaction and implications for mental health. Aesthetic Plast Surg 14: 249–257.
Margalit, M (1989). Academic competence and social adjustment of boys with learning disabilities and boys with behavior disorders. J Learn Disabil 22: 41–45.
Maris, CL, Endriga, MC, Speltz, ML, et al. (2000). Are infants with orofacial clefts at risk for insecure mother-child attachments? Cleft Palate Craniofac J 37: 257–265.
Matson, JL, Ollendick, TH (1988). Enhancing Children's Social Skills: Assessment and Training. New York: Pergamon.
McConaughy, SH, Mattison, RE, Peterson, RL (1994). Behavioral/emotional problems of children with serious emotional disturbances and learning disabilities. School Psychol Rev 23: 81–98.
McGuire, D (1990). An evaluation of a social skills program for adolescents with facial disfigurement. Chicago: Univ. of Illinois. Dissertation.
Miller, AC, Gordon, RM, Daniele, RJ, Diller, L (1992a). Stress, appraisal, and coping in mothers of disabled nondisabled children. J Pediatr Psychol 17: 587–605.
Miller, SM, Sherman, HD, Combs, C, Kruss, T (1992b). Patterns of children's coping with short-term medical and dental stressors: nature implications and future direction. In: Stress and Coping in Child Health, edited by AM LaGreca, LJ Siegel, JL Wallander, and CE Walker. New York: Guilford, pp. 157–190.
Mullins, LL, Olson, RA, Reyes, S, et al. (1991). Risk and resistance factors in the adaptation of mothers of children with cystic fibrosis. J Pediatr Psychol 16: 701–715.
Murphy, LB, Moriarty, AE (1976). Vulnerability, coping, & growth: From infancy to adolescence. New Haven, CT: Yale University Press.
Nash, P (1995). Living with Disfigurement: Psychosocial Implications of Being Born with a Cleft Lip and Palate. Brookfield, VA: Ashgate.
Nelsen, J (1996). Positive Discipline, rev ed. New York: Ballantine.
Nelsen, J, Erwin, C, Duffy, R (1998a). Positive Discipline: The First Three Years. Rocklin, CA: Prima.
Nelsen, J, Erwin, C, Duffy, R (1998b). Temperament, what makes your child unique? Positive Discipline for Preschoolers, rev 2nd ed. Rocklin, CA: Prima. pp. 75–93.
Parker, JG, Asher, SR (1987). Peer relations and later personal adjustment: are low accepted children at risk? Psychol Bull 102: 357–389.
Perrin, J, Guyer, B, Lawrence, JM (1992). Health care services for children and adolescents. In: The Future of Children: US Health Care for Children, Vol. 2, edited by RE Behrman. David and Lucile Packard Foundation, pp. 58–77.
Peters, SAP, Grievink, EH, van Bon, WHJ, van Schilder, AGM (1994). The effects of early bilateral otitis media with effusion on educational attainment: a prospective cohort study. J Learn Disabi!27: 111–121.
Peterson-Falzone, SJ (1990). A cross-sectional analysis of speech results following palatal closure. In: MultidiscipUnary Management of Cleft Lip and Palate, edited by J Bardach and HL Morris. Philadelphia: Saunders, pp. 750–757.
Pillemer, FG, Cook, KV (1989). The psychosocial adjustment of pediatric craniofacial patients after surgery. Cleft Palate J 26: 201–208.
Pless, IB, Roghmann, KJ (1971). Chronic illness and its consequences: observations based on three epidemiological surveys. J Pediatr 79: 351–359.
Pope, AW, Ward, J (1997). Factors associated with peer social competence in preadolescents with craniofacial anomalies. J Pediatr Psychol 22: 455–469.
Richman, LC (1976). Behavior and achievement of cleft palate children. Cleft Palate J 13: 4–10.
Richman, LC (1978a). The effects of facial disfigurement on teachers' perception of ability in cleft palate children. Cleft Palate J 15: 155–160.
Richman, LC (1978b). Parents and teachers: differing views of behavior of cleft palate children. Cleft Palate J 15: 360–364.
Richman, LC (1990). Developmental neuropsychological functions of children with cleft at two age levels. Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, St. Louis, Missouri, April 1990.
Richman, LC (1998). Fearful shyness versus solitary passivity in socially inhibited children with cleft. Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, Baltimore, Maryland, April 20-25, 1998.
Richman, LC (2000). Are reading disabilities of children with cleft related to speech-language variables or to phonemic disassociations? Presented at the annual meeting of the American Cleft Palate-Craniofacial Association, Atlanta, Georgia, April 12, 2000.
Richman, LC, Eliason, MJ (1982). Psychological characteristics of children with cleft lip and palate: intellectual, achievement, behavior, and personality. Cleft Palate J 19: 249–257.
Richman, LC, Eliason, MJ (1984). Type of reading disability related to cleft type and neuropsychological patterns. Cleft Palate J 21: 1-6.
Richman, LC, Eliason, MJ, Lindgren, SD (1988). Reading disability in children with clefts. Cleft Palate J 25: 21–25.
Richman, LC, Harper, DC (1978). School adjustment of children with observable disabilities. J Abnorm Child Psychol 6: 11–18.
Richman, LC, Holmes, CS, Eliason, MJ (1985). Adolescents with cleft lip and palate self-perceptions of appearance and behavior related to personality adjustment. Cleft Palate J 22: 93–95.
Richman, LC, Millard, TL (1997). Cleft lip and palate: longitudinal behavior and relationships of cleft conditions to behavior achievement. J Pediatr Psychol 22: 487–494.
Roberts, JE, Burchinal, MR, Medley, LP, et al. (1995). Otitis media, hearing sensitivity, and maternal responsiveness in relation to language during infancy. J Pediatr 226: 481–489.
Rutter, M, Tizaard, J, Witmore, K (eds) (1970). Education, Health and Behavior. London: Longman.
Schneider, BH, Bryne, BH (1985). Children's social skills training: a meta-analysis. In: Issues in Assessment and Intervention, edited by BH Schneider, KH Rubin, and JE Ledingham. New York: Springer-Verlag, pp. 175–192.
Shaw, WC, Humphreys, S (1982). Influence of children's dentofacial appearance on teacher expectations. Community Dent Oral Epidemiol 10: 313–319.
Sheils, JF, Wolfe, PR (1992). The role of private health insurance in children's health care. In: The Future of Children: US Health Care for Children, Vol. 2, edited by RE Behrman. David and Lucille Packard Foundation, pp. 115–133.
Short-Camilli, C, Garrity, C, Jens, K, et al. (1999). Bully-Proofing “Your School. Longmont, CO: Sopris West.
Sloan, GM (2000). Posterior pharyngeal flap and sphincter pharyngoplasty: the state of the art. Cleft Palate Craniofac J 3 7:112-122.
Sloper, P (2000). Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol 25: 79–91.
Speltz, ML, Armsden, GC, Clarren, SS (1990). Effects of craniofacial birth defects on maternal functioning post infancy. J Pediatr Psychol 25: 177–195.
Speltz, ML, Endriga, MC, Fisher, PA, Mason, CA (1997). Early predictors of attachment in infants with cleft lip and/or palate. Child Dev 68: 12–25.
Speltz, ML, Endriga, MC, Hill, S, et al. (2000). Cognitive and psychomotor development of infants with orofacial clefts. J Pediatr Psychol 25: 185–190.
Spriesterbach, DC (1973). Psychological Aspects of the Cleft Palate Problem. Vols 1 and 2. Iowa City: University of Lowa Press.
Strauss, RP, and American Cleft Palate-Craniofacial Association Team Standards Committee (1998). Cleft Palate and Craniofacial Teams in the United States: a national survey of team organization and standards of care. Cleft Palate Craniofac J 35: 473–480.
Strauss, RP (2001). “Only Skin Deep”: Health, resilience and craniofacial care. Cleft Palate Craniofac J 38: 226–230.
Strieker, G, Clifford, E, Cohen, LK, et al. (1979). Psychosocial aspects of craniofacial disfigurement. Am J Orthod 76: 410–416.
Stool, SE (1990). Ear disease in children with cleft palate: state of the art. In: Multidisciplinary Management of Cleft Lip and Palate, edited by J Bardach, HL Morris, Philadelphia: Saunders, pp. 696–702.
Thomas, A, Birch, HG, Chess, S, Robbins, LC (1961). Individuality in responses of children to similar environmental situations. Am J Psychiatry 127:798-803.
Thomas, A, Chess, S (1957). An approach to the study of sources of individual differences in child behavior. J Clin Exp Psychopathology Quarterly Rev Psychiatry Neurol 18: 347–356.
Thomas, A, Chess, S (1980). The Dynamics of Psychological Development. New York: Brunner/Mazel.
Thomas, A, Chess, S, Birch, HG, et al. (1963). Behavioral Individuality in Early Childhood. New York: New York University Press.
Thompson, RJ, Gil, KM, Burbach, DJ, et al. (1993). Psychological adjustment of mothers of children and adolescents with sickle cell disease: the role of stress, coping methods, and family functioning. J Pediatr Psychol 18: 549–559.
Waitzman, NJ, Romano, PS, Scheffler, RM (1994). Estimates of the economic costs of birth defects. Inquiry 33: 188–205.
Wallander, JL, Varni, JW, Babani, L, et al. (1988). Children with chronic physical disorders: Maternal reports of their psychological adjustment. J Pediatr Psychol 22: 197–212.
Wallander, JL, Varni, JW, Babani, L, et al. (1989). J Pediatr Psychol 24: 371–387.
Wallander, JL, Varni, JW (1992). Adjustment in children with chronic physical disorders: programmatic research on a disability-stress-coping model. In: Stress and Coping in Child Health, edited by AM LaGreca, LJ Siegel, JL Wallander, CE Walker. New York: Guilford Press, pp. 279–298.
Wilson, B (2001). Resources for people with facial differences. Let's face it. http://www.faceit.org/~letsfaceit.