Advancements in Addressing Children’s Fears: A Review and Recommendations

Monica Leppma, Judit Szente, Matthew J. Brosch

Media and societal conditions affect fear development in youth; thus, counselors must remain current in their understanding of these fears in order to meet children’s health, educational and developmental needs. Because of the changing content and course of children’s fears, it is imperative that treatment approaches evolve concurrently. Therefore, there is a need for a review and expansion of the current understanding of children’s fears and anxiety and related treatment considerations. This article aims to connect research and literature regarding children’s fears with current conceptions of emotions, affect regulation and resilience in order to advocate for a holistic and modern approach for addressing fear in children.

Keywords: affect regulation, anxiety, children, fears, resilience

More than a century of research confirms the need for professional counselors to remain current in their understanding and treatment of the fears of children and adolescents (Burnham, 2009; Hall, 1897; Jersild & Holmes, 1935). When discussing youths’ fears, the literature includes the terms fear, anxiety and anxiety disorders. Fear is defined as a distressing emotion resulting from a real or perceived threat, and anxiety is the anticipation (i.e., fear) of a potential future threat (American Psychiatric Association [APA], 2013). The terms fear and anxiety are often used interchangeably or in tandem in the literature as they appear to reflect similar underlying neurobiological processes. Anxiety disorders are included in the discussion because they are psychological disorders that are viewed as developmentally inappropriate or as reflecting pathological levels of fear and anxiety (APA, 2013; Klein, 2009).

While the content and severity of children’s fears varies greatly, the evidence is clear that as society changes, approaches to treating children’s fear and anxiety must be adapted (Burnham, 2009). Burnham (2009) concluded that contemporary fears of today’s youth are influenced by global events (such as natural disasters, war and terrorism), societal changes, and television and media exposure. Stress and negative events contribute to heightened fear responses in children (Ollendick, Langley, Jones, & Kephart, 2001). Any stressful incidents that children experience have the potential to generate fear-related disorders (Robinson, Rotter, Robinson, Fey, & Vogel, 2004). Because of the ever-changing nature of society, it is essential for counselors to remain cognizant of the impact that current events might have on the children with whom they work, particularly in relation to their fears and coping mechanisms.

Current literature points to positive emotions and affect regulation as means of increasing resilience (Fredrickson, 2001; Fredrickson, Cohn, Coffey, Pek, & Finkel, 2008; Hannesdottir & Ollendick, 2007). Resilience, or the ability to overcome adversity, is an essential component of coping with fears and anxiety effectively (Masten, 2001). The increase in adversities during the past decade, such as terrorist attacks, war, hurricanes and school shootings (Burnham, 2005, 2007, 2009), warrants a renewed focus on children’s fears and the promotion of resilience (Burnham, 2009; Tugade, Fredrickson, & Barrett, 2004).

Fears, worries and other stressors (e.g., academic issues, conflict, change) are typical aspects of human development; however, children often do not learn effective or appropriate skills to help them cope with these challenges (Robinson et al., 2004). Although children may develop coping mechanisms in the absence of direct instruction, these are often avoidant mechanisms that lead to poorer outcomes (Abei, Giger, Plattner, Metzke, & Steinhausen, 2013). Maladaptive fear responses can lead to the development of anxiety disorders (Kiel & Buss, 2014). Anxiety is the most prevalent childhood disorder and a strong predictor of adult psychopathology (Weems & Silverman, 2006). Thus, teaching children helpful ways to cope with fears can promote healthy development.

The need for developing effective coping skills in children is most evident during times of natural disasters and global crises (Burnham, 2009). During these periods, children are at increased risk for developing situation-specific fears. For instance, children who witnessed the September 11th attacks became more fearful of war and terrorism as a result (Burnham, 2007). This increased fearfulness also is the case for children who experience natural disasters such as earthquakes, wildfires and even lightning strikes (Dollinger, O’Donnell, & Staley, 1984).

In addition to dealing with global crises or natural disasters, counselors must be able to help children with everyday problems such as graphic media coverage of war and disasters, teasing, bullying, family conflict, economic problems, and academic failure (Burnham, 2009). For example, Robinson, Robinson, and Whetsell (1988) found that children’s fears of people and of being alone have increased since early research began on children’s fears in the 1900s. While the causality behind this change is unknown, the authors suggested possible associations with increased exposure to violent media coverage, changes in family structure and the rise in programs teaching about stranger danger. There is increasingly more evidence that television and other media contribute to children’s fears (Burnham, 2009; Burnham & Hooper, 2008; Lahikainen, Kraav, Kirmanen, & Taimalu, 2006). Furthermore, children’s fears are not relegated only to realistic or plausible events. Elementary school-aged children, in particular, have a limited conception of the world and tend to confuse reality and fantasy, which can lead to unnecessary fears and distorted assumptions (Moses, Aldridge, Cellitti, & McCorquodale, 2003). This confluence presents children with a vast range of potential fears, and their inability to cope with such fears can have devastating effects.

It follows, then, that counseling approaches for fear-related problems in children should evolve commensurately with contemporary society, and professional counselors must improve their current practices for the treatment of children’s fears. The first step in this process is to identify areas that can be improved in order to accentuate current treatment modalities. The purpose of this article is to provide an overview of the emerging research relevant to the fear and anxiety experienced by school-aged children and adolescents. More specifically, this article aims to bring together new research and theory on positive emotions that can aid professional counselors in cultivating resilience and affect regulation in the children with whom they work. To this end, the following article explores the following: factors related to fear development in children and adolescents (children throughout this paper refers to children and adolescents), issues related to treatment, and implications for counselors.

Fear Development

Considerable literature exists outlining the normative progression of fear development in children (e.g., Burnham, 2005, 2009; Driessnack, 2006; Elbedour, Shulman, & Kedem, 1997; Lahikainen, Kirmanen, Kraav, & Taimalu, 2003; Lahikainen et al., 2006; Robinson, Rotter, Fey, & Robinson, 1991; Robinson et al., 2004; Sayfan, 2008). Research over the decades has indicated that common fears of children include the broad categories of animals, darkness, death and the supernatural. However, research also demonstrates that the content of youth’s fears changes along with the advancement of technology, incorporating elements that have become socially relevant and discarding those that have become obsolete (Burnham, 2009).

The fear response consists of three components: thoughts, emotions and physical sensations (Hannesdottir & Ollendick, 2007; Robinson et al., 2004). Distressing events stimulate fear and anxiety in children, but fears also can arise when a child anticipates possible risk of injury, pain or loss (Burnham, 2009; Robinson et al., 1991). As an upsetting event proceeds from either a real or imagined threat, this anticipation of injury, pain or loss can evoke a fear response in a child. Thus, fear can develop from actual events or from beliefs and perceptions.

While excessive childhood fears are correlated with adult psychopathology, it should be noted that fear is a normative aspect of childhood development, so fears themselves are not considered the problem (Moses et al., 2003; Robinson et al., 1988). In fact, there are positive aspects of fear, such as self-preservation, galvanizing of internal coping resources, improved focus and an increased sense of vitality (Goud, 2005; Robinson et al., 1988; Robinson et al., 1991), but the negative effects of children’s fears can be serious. Fears may disrupt sleep, create exhaustion and hinder performance (Cartwright-Hatton, 2006; Robinson et al., 1991). Moreover, children suffering from fear often exhibit diminished academic achievement because fear interrupts motivation and the ability to concentrate (Moses et al., 2003; National Scientific Council on the Developing Child, 2010).

Researchers still do not completely understand the etiology of childhood fears and anxiety (Ollendick et al., 2001). It is likely that fear development involves some hereditary predisposition and genetics (Eley, Rijsdijk, Perrin, O’Connor, & Bolton, 2008; Klein, 2009). There is evidence that children’s characteristics and temperaments influence their fear development (Weems & Silverman, 2006). For example, Muris and Ollendick (2005) found a link between fearful or inhibited temperament and childhood anxiety disorders. Overall, research indicates that there is a moderate correlation between genetics and fear-related symptoms, but fear and anxiety appear to arise from a complex interaction among a variety of factors (Weems & Stickle, 2005). Researchers believe that behavioral (Ollendick et al., 2001; Weems & Stickle, 2005) and social learning also play a part.

Behavioral and Social Learning Factors

The behaviorally based factors in fear acquisition include (a) exposure to negative stimuli, (b) conditioning through negative experiences, (c) social learning through others’ modeling or (d) exposure to upsetting information (Muris, Merckelbach, Gadet, & Moulaert, 2000; Ollendick et al., 2001). For example, Dubi, Rapee, Emerton, and Schniering (2008) found that toddlers indicated fear of objects based on their mother’s positive or negative reaction to the object, regardless of the child’s temperament, which supports a social learning aspect to fear acquisition. There is additional empirical evidence that fear acquired indirectly through social observation, with no personal experience of the aversive event, engages similar neural mechanisms as traditional behaviorally based stimulus-response fear conditioning (Olsson, Nearing, & Phelps, 2007). Field, Lawson, and Banerjee (2008) found support for the effect of verbal information on persistent fear acquisition in children. These studies reinforce the notion that fear can be acquired through behavioral and social learning factors. Fears resulting from behaviorally based factors have been correlated with anxiety, phobias (fearful or anxious responses to, or avoidance of, specific objects or situations; APA, 2013), and behavior problems in children (Gao, Raine, Venables, Dawson, & Mednick, 2010).

Cognitive Factors

In addition to behavioral and social learning explanations of fear acquisition, there is evidence for cognitive-based fear development. Research indicates that some fears are associated with maladaptive thinking patterns (King, Muris, & Ollendick, 2005). Maladaptive thoughts can take the form of negative self-appraisal, negative self-talk or dysfunctional evaluation of circumstances (King et al., 2005). Sayfan and Lagattuta (2008) found that children between the ages of 3 and 7 are more aware than previously believed regarding the relationship between fears, beliefs and knowledge. Fearful children experience numerous cognitive distortions such as a tendency to doubt their ability to cope, overestimation of the likelihood of adverse consequences and interpretation of threatening information in a distorted manner (Prins & Ollendick, 2003). This habitual negative assessment of circumstances is associated with elevated fear and anxiety (Ollendick et al., 2001). Schell, Dawson, and Marinkovic (1991) suggested that fear development is a complex process that includes autonomic conditioned responses in addition to cognitive and emotional components. Cognitive factors, therefore, play a clear role alongside behavioral and social learning explanations of fear development.

It is important to note that children’s fears can intensify over time if they are not addressed appropriately (Moses et al., 2003). Gao et al. (2010) found 3 to 8 year olds’ fear conditioning increases with age, with the most substantial increase occurring between the ages of 5 and 6. Unresolved childhood fears may have deleterious effects on development and contribute to adult mental illness (Moses et al., 2003; Saavedra, Silverman, Morgan-Lopez, & Kurtines, 2010). This information suggests that addressing and treating fears in childhood may be an effective means of preventing fear-related psychopathology in adulthood.

Treatment

Cognitive-behavior therapy (CBT) is the most widely used and empirically supported treatment for fear-related disorders. Research demonstrates that CBT is effective for 60–70% of children, leaving about one-third of the population who do not respond to CBT (Hannesdottir & Ollendick, 2007; Trosper, Buzzella, Bennett, & Ehrenreich, 2009). Because a sizeable number of children do not appear to benefit from CBT, it seems worthwhile to examine additional approaches or adjuncts to traditional CBT that may be effective in treating fearful children.

Affect Regulation

Awareness of emotions is the foundation of affect regulation (Suveg, Hoffman, Zeman, & Thomassin, 2009). Affect regulation, as defined here, is the intentional process that an individual employs to modify emotional states in order to achieve desirable social and individual goals (Eisenberg & Spinrad, 2004). This definition refers to controlling both negative and positive emotions, and encompasses understanding and expressing emotions (Hannesdottir & Ollendick, 2007; Ursache, Blair, & Raver, 2012). Research suggests that absence of emotion regulation skills often lead to the development of anxiety disorders (Esbjørn, Bender, Reinholdt-Dunne, Munck, & Ollendick, 2012; Hannesdottir & Ollendick, 2007; Weems & Silverman, 2006). This research on the role of emotion regulation in fear development is relevant to counselors working with the contemporary fears of children and adolescents.

Consequently, research indicates that the missing link in CBT approaches for working with fear-related issues in youth is greater emphasis on affect regulation (Hannesdottir & Ollendick, 2007; Suveg & Zeman, 2004). In other words, children who do not respond successfully to traditional CBT may need a more extensive education and greater focus on regulating emotions beyond feelings of anxiety. Children with fear-related issues tend to experience more negative thoughts and feelings than neutral or positive ones. Learning to correctly identify emotions across varying situations (both positive and negative) helps children gain a sense of control over their feelings (Hannesdottir & Ollendick, 2007). Thus, as an adjunct to CBT techniques such as relaxation training and cognitive restructuring, counselors can teach children and adolescents how to identify and manage their full range of emotions.

Emotional dysregulation is defined as a limited ability to control and modulate feelings in order to allow successful functioning in social relationships and emotional well-being (Hannesdottir & Ollendick, 2007; Ursache et al., 2012). Fearful children tend to avoid experiencing anxiety-provoking situations as well as discussing the associated negative emotions. This avoidance behavior is believed to contribute to emotional dysregulation because it denies opportunities for successfully managing triggered emotions (Hannesdottir & Ollendick, 2007). As a consequence, anxious and fearful children lack a sense of mastery over their internal emotional reactions (Weems, Silverman, Rapee, & Pina, 2003). Exposure therapy is an important and effective component of CBT that addresses avoidance behavior by behaviorally desensitizing children via gradual exposure to a hierarchy of fears until the fear response subsides (Hannesdottir & Ollendick, 2007; Trosper, Buzzella, Bennett, & Ehrenreich, 2009). While exposure helps children acclimate to anxiety-provoking situations or objects, it is unknown whether exposure improves children’s ability to cope with associated emotions (Hannesdottir & Ollendick, 2007). In those cases where the child does not appear to respond successfully to exposure therapy, or regresses to pathological reactions, counselors can consider additional affect regulation strategies and interventions.

In one example of an affect regulation intervention, the counselor and client each choose an emotion they are experiencing from a feelings chart. Next, the counselor models for the child a discussion of how he or she knows they are feeling that way and why. Finally, the child is given the opportunity to do the same. This process helps the child understand specific emotions, normalizes the experiencing of emotions and models effective communication about emotions. Another suggestion is to utilize vignettes or stories to elicit specific emotions, process these emotions with the client and then brainstorm ways to manage the emotions (Suveg, Kendall, Comer, & Robin, 2006). Bibliotherapy also has been shown to be particularly helpful when working with fearful children (Moses et al., 2003; Robinson et al., 2004).

Interventions such as these help children acquire a repertoire of emotion regulation skills (Suveg et al., 2006). Fearful children must learn to become aware of their internal emotional states and then express or discuss their emotions effectively (Ursache et al., 2012). Building upon children’s emotional awareness can be a useful adjunct in enhancing other skills training that counselors provide in their sessions with fearful children and adolescents. Suveg et al. (2006) suggested that treatment for fear-related issues should encompass all emotions that children may have difficulty regulating, not solely fear and anxiety. Learning to correctly identify emotions helps children and adolescents gain a sense of control over their emotions and self-efficacy to change their emotional state (Hannesdottir & Ollendick, 2007).

Researchers posit that explicitly targeting affect regulation would improve treatment outcomes for youth with fear-related disorders (Hannesdottir & Ollendick, 2007; Trosper, Buzzella, Bennett, & Ehrenreich, 2009). The ability to self-regulate emotion incorporates autonomy, self-efficacy, adaptability, positivity and prosocial behavior (Hannesdottir & Ollendick, 2007; Ursache et al., 2012). In addition, current research suggests that professional counselors should provide interventions and psychoeducation on positive emotions to promote emotion regulation and resilience in children and adolescents (Gloria & Steinhardt, 2014; Hutchinson & Pretelt, 2010).

Positive Emotions

Fredrickson’s (1998, 2001) broaden-and-build theory of positive emotions provides a framework for understanding the role of positive emotions in fostering resilience. Negative emotions, such as fear and anxiety, narrow one’s focus and attention as a survival mechanism in preparation to either confront or avoid a perceived threat. This is known as the fight or flight response. However, this type of narrow, focused response also can cause people to become stuck by limiting flexibility and creativity in finding new solutions (Hannesdottir & Ollendick, 2007; Hutchinson & Pretelt, 2010; Tugade et al., 2004). Negative emotions are central in the development of psychopathology because they tend to foster higher levels of arousal than positive emotions (Suveg et al., 2009). This information is relevant to working with youth experiencing fear-related problems, because “people have limited ability to think of and evaluate different solutions when they are overwhelmed by negative emotions in a stressful situation” (Hannesdottir & Ollendick, 2007, p. 286).

The cultivation of positive emotions such as joy, gratitude, hope, serenity, interest and inspiration builds resilience in the form of enduring internal and social resources that one can draw upon when necessary (Fredrickson, 1998). Positive emotions help discard old negative patterns of thought and behavior to pursue novel ideas and actions (Fredrickson, 2001; Isen, 2009). Positive emotions also are a source of human strength that facilitates flexibility, creative problem-solving and more efficient and open-minded thinking, all important factors in resilience (Fredrickson, 2001; Isen, 2009). Experiencing positive emotions broadens individuals’ perspectives and reduces self-focus, allowing for a greater variety of behavioral responses (Isen, 2009). Moreover, experiencing positive emotions creates an upward spiral wherein positive emotions build upon each other to foster emotional and psychological well-being. Positive emotions also facilitate broad-minded and flexible thinking, which in turn, increases coping and problem-solving ability. Successful coping then leads to more positive emotions (Tugade et al., 2004). Furthermore, successful coping and problem-solving cultivate self-worth in children, which fosters a sense of self-efficacy and belief in their capacity to successfully handle stressful situations (Cloitre, Morin, & Linares, 2010; Robinson et al., 2004).

Positive emotions build physical, social, emotional and intellectual capacity to confront and overcome obstacles (Fredrickson, 2001; Tugade et al., 2004). For example, the positive emotion of joy prompts play, motivation and exploration. There is evidence that play contributes a wide array of resources for children (Trice-Black, Bailey, & Riechel, 2013). Imaginative play provides a safe environment for pretending and experimenting with emotional expression, which is important to developing emotion regulation (Lester & Russel, 2010). In fact, Hoffman and Russ (2012) found a relationship between imaginative play, positive affect and emotion regulation in 5- to 10-year-old girls (n = 61). Furthermore, the pushing of limits and exploring that occurs during play increases a child’s sense of self-efficacy and provides new information about the environment (Lester & Russel, 2010). Play can build physical resources of agility, coordination and strength. Play also promotes social resources such as connection, bonding and social skills (O’Connor & Stagnitti, 2011). In addition, play fosters the intellectual resources of problem-solving, creativity and the learning of new information (Fredrickson, 2001; Lester & Russel, 2010; Trice-Black et al., 2013). Finally, play cultivates psychological and emotional resources such as optimism, goal-orientation, a sense of identity (Fredrickson, 2000, 2001), and increased self-worth (Hippe, 2004). Thus, the positive emotions involved in play promote a number of factors that build resilience.

The resources developed from joy and other positive emotions such as love, gratitude, awe, amusement, interest and hope can become adaptive features that may enhance resilience in the face of future adversity. Repeated experience of these positive emotions builds internal and social resources that accumulate over time and can be drawn upon in times of need (Fredrickson, 2001). Positive emotion-based coping strategies, such as positive reappraisal and infusing meaning into experiences, have been shown to buffer against stress (Folkman & Moskowitz, 2000). There is additional evidence that cultivating positive emotions during times of adversity also may replenish the ability to cope (Tugade et al., 2004).

In addition to buffering against stress, generating positive emotions seems to have an undoing effect. In other words, positive emotions appear to serve as an antidote to the effects of negative emotions such as fear and anxiety (Fredrickson, 2003) and therefore can reinforce resilience. For example, Fredrickson and Levenson (1998) demonstrated that the elicitation of positive emotions increased the speed of cardiovascular recovery following a distressing event. This increased resilience to a distressing event is an encouraging sign that positive emotions, which can be achieved through emotion regulation, have a beneficial effect during times of distress. Thus, cultivating positive emotions may improve youths’ responses to negative or stressful situations and counteract the effects of chronic worry or fear (Hannesdottir & Ollendick, 2007).

The key for counselors is to fill their therapeutic toolboxes with interventions that directly target the spectrum of emotions and affect regulation. It is important to remember that affect regulation requires the ability to distinguish between all emotions. Interventions should include teaching skills for generating positive emotions as a means of building internal and social resources. Fredrickson (2009) proposed a positivity ratio of three positive emotions for every negative emotion to develop resilience. In other words, experiencing a greater quantity of positive emotions over time helps to buffer against, and undo, the negative effects of stress.

Resilience and Emotions

Burgeoning research points to the importance of understanding the relationship between fear-related disorders and emotions in order to promote resilience in children. Esbjørn et al. (2012) cited evidence of a link between anxiety symptoms (e.g., overwhelming fear, worry, agitation, heart palpitations) and lack of emotion regulation skills. Moreover, fearful children tend to have an even more limited understanding of emotions in general than their normative peers (Hannesdottir & Ollendick, 2007; Suveg et al., 2009). Research findings have suggested that children diagnosed with anxiety disorders also report experiencing higher levels of emotional intensity and somatic symptoms in response to emotions than children without anxiety disorders (Suveg et al., 2009; Suveg & Zeman, 2004). Finally, there is evidence of a relationship between the inability to regulate emotion and heightened levels of negative emotion (Esbjørn et al., 2012; Suveg & Zeman, 2004). Conversely, research indicates that resilient people demonstrate greater positive emotionality (Tugade et al., 2004). These findings all suggest that emotions and emotion regulation play an integral role in the development, course and potential modulation of fear-related disorders as well as the development of resilience.

In fact, Gloria and Steinhardt (2014) found, in a sample of 200 postdoctoral fellows, that positive emotions were directly related to greater resilience. Their findings suggested that positive emotions were positively related to adaptive coping and negatively related to maladaptive coping. In addition, resilience moderated the relationship between stress and trait anxiety and depressive symptoms. The authors concluded that positive emotions may have the potential to build resilience in individuals experiencing stressful situations, and resilience may in turn increase positive emotions, thus providing support for Fredrickson’s (1998, 2001) broaden-and-build theory. These results further support the notion of emphasizing the cultivation of positive emotions in helping children to build resilience.

Children develop resilience when they successfully manage stressors throughout daily life (Cloitre et al., 2010). Resilience improves youths’ ability to cope with fear and anxiety and mitigates some of the adverse effects of fear-related experiences (Burnham, 2009). As mentioned earlier, resilience is a set of qualities that empowers people to successfully adapt or bounce back when facing some type of adversity (Burnham, 2009; Tugade et al., 2004). Examples of resilient qualities include self-efficacy, internal locus of control, adaptability, flexibility, self-worth, optimism, positivity and social connectedness (Burnham, 2009; Grotberg, 1995; Hutchinson & Pretelt, 2010; Robinson et al., 2004; Tugade et al., 2004). Research indicates that resilient individuals possess a positive attitude toward life and are curious and open to new experiences (Masten, 2001). Although the cultivation of resilience is a natural process in child development, it can be inhibited by traumatic events, temperament, and societal or environmental conditions (Masten, 2001). Improving affect regulation can help build resilience in youth, which may in turn minimize the negative effects of fearful or anxious experiences.

Implications and Recommendations

We have provided an overview of the current landscape of children’s fears to help delineate a contemporary, adaptive and holistic approach to treatment. Based on a review of the current literature, we recommend that counselors incorporate interventions that specifically teach emotional awareness when working with fearful or anxious children. While many CBT interventions implicitly address emotions, we are suggesting that counselors provide explicit psychoeducation concerning emotions, in order to explain the purpose, importance and range of emotions. This approach promotes affect regulation skills by helping children to become more aware of how they are feeling and why, and to adjust their emotional state to allow for a more beneficial outcome. Affect regulation is crucial as it provides children with tools that may be generalized across various situations and stressors. The major implication is that this broad-based approach equips children with the ability to counteract future stressors without the need for continued situation-specific interventions.

In addition to a direct emphasis on emotional awareness and regulation, we recommend incorporating interventions that cultivate positive emotions. While CBT is generally inclusive of the way that thoughts and feelings are interconnected, there is often little time devoted to the effects of positive emotions in relation to fears and anxiety. The development of skills that cultivate positive emotions, in addition to challenging negative thoughts and emotions, can improve resilience to future stressors. Developing skills related to positive emotions can help fearful and anxious children to maintain an outlook that is more conducive to normative functioning and resilience than techniques such as cognitive reframing can accomplish alone. This information is particularly relevant as many CBT approaches focus on the specific presenting fear such as spiders, heights or social situations. An approach that targets a wider range of emotions with the goal of creating more positive emotions helps children not just overcome their immediate fears, but may prepare them to adequately confront and manage future fears.

This focus on positive emotions has the intended benefit of promoting resilience. As children learn how to cumulatively produce positive emotional states, they build resilience that will buffer them against potentially distressing stimuli. There is burgeoning evidence that generating positive emotions builds resources, broadens one’s ability to respond to stressors and has an undoing effect on emotions such as fear and anxiety. Research in the area of positive emotions and positive psychology provides a rich assortment of techniques for building strengths and resilience (e.g., Seligman, Steen, Park, & Peterson, 2005). We recommend that counselors incorporate this information into their work with fearful children.

The  premise of this paper is that counselors can help fill the current gaps in treatment methodology with a focus on developing increased resilience in children by teaching affect regulation and positive emotions. Incorporating these constructs into a counselor’s current approach provides him or her with the widest range of treatment options in a way that allows children to confront current and future fears in a holistic fashion that is both specific and generalizable. Giving children access to these tools can prepare them for a range of potentially fear-inducing experiences in a way that allows them to cope effectively and draw upon their internal resources. This process continually expands client resilience and self-efficacy, preparing clients to confront a variety of stressors effectively.

This concentration on affect regulation, resilience and positive emotions appears to be an effective means of expanding upon current treatment approaches. Further research is recommended in the arena of adjunctive counseling modalities that are inclusive of resilience, affect regulation and positive emotions in order to determine their efficacy for those who are unresponsive to CBT. It also would be worthwhile to examine how these concepts affect treatment when used alongside CBT for those who do respond well to traditional CBT. By focusing on these constructs in conjunction with other empirically supported treatments, it is our belief that children’s outcomes will improve and they will be better prepared to confront not only specific fears in the present, but myriad potential stressors in the future.

Conflict of Interest and Funding Disclosure

The authors reported no conflict of interest or funding contributions for the development of this manuscript.

 

References

Abei, M., Giger, J., Plattner, B., Metzke, C. W., & Steinhausen, H.-C. (2013). Problem coping skills, psychosocial adversities and mental health problems in children and adolescents as predictors of criminal outcomes in young adulthood. European Child & Adolescent Psychiatry, 23, 283–293. doi:10.1007/s00787-013-0458-y

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

Burnham, J. J. (2005). Fears of children in the United States: An examination of the American fear survey schedule with 20 new contemporary fear items. Measurement & Evaluation in Counseling & Development, 38, 78–91.

Burnham, J. J. (2007). Children’s fears: A pre-9/11 and post-9/11 comparison using the American fear survey schedule for children. Journal of Counseling & Development, 85, 461–466. doi:10.1002/j.1556-6678.2007.tb00614.x

Burnham, J. J. (2009). Contemporary fears of children and adolescents: Coping and resiliency in the 21st century. Journal of Counseling & Development, 87, 28–35. doi:10.1002/j.1556-6678.2009.tb00546.x

Burnham, J. J., & Hooper, L. M. (2008). The influence of the war in Iraq on American youth’s fears: Implications for professional school counselors. Professional School Counseling, 11, 395–403.

Cartwright-Hatton, S. (2006). Anxiety of childhood and adolescence: Challenges and opportunities. Clinical Psychology Review, 26, 813–816. doi:10.1016/j.cpr.2005.12.001

Cloitre, M., Morin, N. A., & Linares, O. (2010). Children’s resilience in the face of trauma. NYU Child Study Center. Retrieved from http://www.education.com/reference/article/Ref_Childrens_Resilience/

Dollinger, S. J., O’Donnell, J. P., & Staley, A. A. (1984). Lightning-strike disaster: Effects on children’s fears and worries. Journal of Consulting and Clinical Psychology, 52, 1028–1038.

Driessnack, M. (2006). Draw-and-tell conversations with children about fear. Qualitative Health Research, 16, 1414–1435. doi:10.1177/1049732306294127

Dubi, K., Rapee, R. M., Emerton, J. L., & Schniering, C. A. (2008). Maternal modeling and the acquisition of fear and avoidance in toddlers: Influence of stimulus preparedness and child temperament. Journal of Abnormal Child Psychology, 36, 499–512.doi:10.1007/s10802-007-9195-3

Eisenberg, N., & Spinrad, T. L. (2004). Emotion-related regulation: Sharpening the definition. Child Development, 75, 334–339. doi:10.1111/j.1467-8624.2004.00674.x

Elbedour, S., Shulman, S., & Kedem, P. (1997). Children’s fears: Cultural and developmental perspectives. Behaviour Research and Therapy, 35, 491–496.

Eley, T. C., Rijsdijk, F. V., Perrin, S., O’Connor, T. G., & Bolton, D. (2008). A multivariate genetic analysis of specific phobia, separation anxiety and social phobia in early childhood. Journal of Abnormal Child Psychology, 36, 839–848. doi:10.1007/s10802-008-9216-x

Esbjørn, B. H., Bender, P. K., Reinholdt-Dunne, M. L., Munck, L. A., & Ollendick, T. H. (2012). The development of anxiety disorders: Considering the contributions of attachment and emotion regulation. Clinical Child and Family Psychology Review, 15, 129–143.doi:10.1007/s10567-011-0105-4

Field, A. P., Lawson, J., & Banerjee, R. (2008). The verbal threat information pathway to fear in children: The longitudinal effects on fear cognitions and the immediate effects on avoidance behavior. Journal of Abnormal Psychology, 117, 214–224. doi:10.1037/0021-843X.117.1.214

Folkman, S., & Moskowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55, 647–654. doi:10.1037//0003-066X.55.6.647

Fredrickson, B. L. (1998). Cultivated emotions: Parental socialization of positive emotions and self-conscious emotions. Psychological Inquiry: An International Journal for the Advancement of Psychological Theory, 9, 279–281. doi:10.1207/s15327965pli0904_4

Fredrickson, B. L. (2000). Cultivating positive emotions to optimize health and well-being. Prevention & Treatment, 3, 1–25. doi:10.1037/1522-3736.3.1.31a

Fredrickson, B. L. (2001). The role of positive emotions in positive psychology: The broaden-and-build theory of positive emotions. American Psychologist, 56, 218–226. doi:10.1037/0003-066X.56.3.218

Fredrickson, B. L. (2003). The value of positive emotions: The emerging science of positive psychology is coming to understand why it’s good to feel good. American Scientist, 91, 330–335. doi:10.1511/2003.4.330

Fredrickson, B. L. (2009). Positivity: Top-notch research reveals the 3-to-1 ratio that will change your life. New York, NY: Three Rivers.

Fredrickson, B. L., Cohn, M. A., Coffey, K. A., Pek, J., & Finkel, S. M. (2008). Open hearts build lives: Positive emotions, induced through loving-kindness meditation, build consequential personal resources. Journal of Personality and Social Psychology, 95, 1045–1062. doi:10.1037/a0013262

Fredrickson, B. L., & Levenson, R. W. (1998). Positive emotions speed recovery from the cardiovascular sequelae of negative emotions. Cognition & Emotion, 12, 191–220.

Gao, Y., Raine, A., Venables, P. H., Dawson, M. E., & Mednick, S. A. (2010). Reduced electrodermal fear conditioning from ages 3 to 8 years is associated with aggressive behaviors at age 8 years. The Journal of Child Psychology and Psychiatry, 51, 550–558.doi:10.1111/j.1469-7610.2009.02176.x

Gloria, C. T., & Steinhardt, M. A. (2014). Relationship among positive emotions, coping, resilience and mental health. Stress and Health. Retrieved from http://onlinelibrary.wiley.com/doi/10.1002/smi.2589/pdf

Goud, N. H. (2005). Courage: Its nature and development. The Journal of Humanistic Counseling, Education and Development, 44, 102–116. doi:10.1002/j.2164-490X.2005.tb00060.x

Grotberg, E. H. (1995). A guide to promoting resilience in children: Strengthening the human spirit. Retrieved from http://resilnet.uiuc.edu/library/grotb95b.html#chapter1

Hall, G. S. (1897). A study of fears. American Journal of Psychology, 8, 147–249. doi:10.2307/1410940

Hannesdottir, D. K., & Ollendick, T. H. (2007). The role of emotion regulation in the treatment of child anxiety disorders. Clinical Child and Family Psychology Review, 10, 275–293. doi:10.1007/s10567-007-0024-6

Hippe, J. (2004). Self-awareness: A precursor to resiliency. Reclaiming Children & Youth, 12, 240–242.

Hoffman, J., & Russ, S. (2012). Pretend play, creativity, and emotion regulation in children. Psychology of Aesthetics, Creativity, and the Arts, 6, 175–184.

Hutchinson, J., & Pretelt, V. (2010). Building resources and resilience: Why we should think about positive emotions when working with children, their families and their schools. Counselling Psychology Review, 25, 20–27.

Isen, A. M. (2009). A role for neuropsychology in understanding the facilitating influence of positive affect on social behavior and cognitive processes. In C. R. Snyder & S. J. Lopez (Eds.), Oxford handbook of positive psychology (2nd ed.; pp. 503–518). New York, NY: Oxford University Press.

Jersild, A. T., & Holmes, F. B. (1935). Children’s fears. New York, NY: Teachers College, Columbia University.

Kiel, E. J., & Buss, K. A. (2014). Dysregulated fear in toddlerhood predicts kindergarten social withdrawal through protective parenting. Infant and Child Development, 23, 304–313. doi:10.1002/icd.1855

King, N. J., Muris, P., & Ollendick, T. H. (2005). Childhood fears and phobias: Assessment and treatment. Child and Adolescent Mental Health, 10, 50–56.doi:10.1111/j.1475-3588.2005.00118.x

Klein, R. G. (2009). Anxiety disorders. Journal of Child Psychology and Psychiatry, 50(1–2), 153–162.

doi:10.1111/j.1469-7610.2008.02061.x

Lahikainen, A. R., Kirmanen, T., Kraav, I., & Taimalu, M. (2003). Studying fears in young children: Two interview methods. Childhood: A Global Journal of Child Research, 10, 83–104.

Lahikainen, A. R., Kraav, I., Kirmanen, T., & Taimalu, M. (2006). Child-parent agreement in the assessment of young children’s fears: A comparative perspective. Journal of Cross-Cultural Psychology, 37, 100–119. doi:10.1177/0022022105282298

Lester, S., & Russel, W. (2010). Children’s right to play: An examination of the importance of play in the lives of children worldwide. Working Paper No. 57. The Hague, The Netherlands: Bernard van Leer Foundation.

Masten, A. S. (2001). Ordinary magic: Resilience processes in development. American Psychologist, 56, 227–238. doi:10.1037//0003-066X.56.3.227

Moses, L. F., Aldridge, J., Cellitti, A., & McCorquodale, G. (2003). Children’s fears of war and terrorism: A resource for teachers and parents. Olney, MD: Association for Childhood Education International.

Muris, P., Merckelbach, H., Gadet, B., & Moulaert, V. (2000). Fears, worries, and scary dreams in 4- to 12-year-old children: Their content, developmental pattern, and origins. Journal of Clinical Child Psychology, 29, 43–52.

Muris, P., & Ollendick, T. H. (2005). The role of temperament in the etiology of child psychopathology. Clinical Child and Family Psychology Review, 8, 271–289. doi:10.1007/s10567-005-8809-y

National Scientific Council on the Developing Child. (2010). Persistent fear and anxiety can affect young children’s learning and development. Retrieved from http://developingchild.harvard.edu/resources/reports_and_working_papers/working_papers/wp9/

O’Connor, C., & Stagnitti, K. (2011). Play, behavior, language and social skills: The comparison of a

play and a non-play intervention within a specialist school setting. Research in Developmental

Disabilities, 32, 1205–1211. doi:10.1016/j.ridd.2010.12.037

Ollendick, T. H., Langley, A. K., Jones, R. T., & Kephart, C. (2001). Fear in children and adolescents: Relations with negative life events, attributional style, and avoidant coping. Journal of Child Psychology and Psychiatry, 42, 1029–1034. doi:10.1111/1469-7610.00801

Olsson, A., Nearing, K. I., & Phelps, E. A. (2007). Learning fears by observing others: The neural systems of social fear transmission. Social Cognitive and Affective Neuroscience, 2, 3–11. doi:10.1093/scan/nsm005

Prins, P. J. M., & Ollendick, T. H. (2003). Cognitive change and enhanced coping: Missing mediational links in cognitive behavior therapy with anxiety-disordered children. Clinical Child and Family Psychology Review, 6, 87–105. doi:10.1023/A:1023730526716

Robinson, E. H., Robinson, S. L., & Whetsell, M. V. (1988). A study of children’s fears. The Journal of Humanistic Education and Development, 27, 84–95. doi:10.1002/j.2164-4683.1988.tb00163.x

Robinson, E. H., Rotter, J. C., Fey, M. A., & Robinson, S. L. (1991). Children’s fears: Toward a preventive model. The School Counselor, 38, 187–202.

Robinson, E. H., Rotter, J. C., Robinson, S. L., Fey, M. A., & Vogel, J. E. (2004). Fears, stress, and trauma: Helping children cope. Greensboro, NC: CAPS Press.

Saavedra, L. M., Silverman, W. K., Morgan-Lopez, A. A., & Kurtines, W. M. (2010). Cognitive behavioral treatment for childhood anxiety disorders: long-term effects on anxiety and secondary disorders in young adulthood. Journal of Child Psychology and Psychiatry, 51, 924–934. doi:10.1111/j.1469-7610.2010.02242.x

Sayfan, L. (2008). Scaring the monster away: Children’s and parents’ conceptions of coping strategies to deal with children’s fear of real and imaginary entities (Doctoral dissertation). Retrieved from http://mindbrain.ucdavis.edu/people/lsayfan/Dissertation.%20Liat%20Sayfan.pdf

Sayfan, L., & Lagattuta, K. H. (2008). Grownups are not afraid of scary stuff, but kids are: Young children’s and adults’ reasoning about children’s, infants’, and adults’ fears. Child Development, 79, 821–835. doi:10.1111/j.1467-8624.2008.01161.x

Schell, A. M., Dawson, M. E., & Marinkovic, K. (1991). Effects of potentially phobic conditioned stimuli on retention, reconditioning, and extinction of the conditioned skin conductance response. Psychophysiology, 28, 140–153.

Seligman, M. E., Steen, T. A., Park, N., & Peterson, C. (2005). Positive psychology progress: Empirical validation of interventions. American Psychologist, 60, 410–421. doi:10.1037/0003-066X.60.5.410

Suveg, C., Hoffman, B., Zeman, J. L., & Thomassin, K. (2009). Common and specific emotion-related predictors of anxious and depressive symptoms in youth. Child Psychiatry and Human Development, 40, 223–239. doi:10.1007/s10578-008-0121-x

Suveg, C., Kendall, P. C., Comer, J. S., & Robin, J. (2006). Emotion-focused cognitive-behavioral therapy for anxious youth: A multiple baseline evaluation. Journal of Contemporary Psychotherapy, 36, 77–85.

doi:10.1007/s10879-006-9010-4

Suveg, C., & Zeman, J. (2004). Emotion regulation in children with anxiety disorders. Journal of Clinical Child & Adolescent Psychology, 33, 750–759. doi:10.1207/s15374424jccp3304_10

Trice-Black, S., Bailey, C. L., & Riechel, M. E. K. (2013). Play therapy in school counseling. Professional School Counseling, 16, 303–312.

Trosper, S. E., Buzzella, B. A., Bennett, S. M., & Ehrenreich, J. T. (2009). Emotion regulation in youth with emotional disorders: Implications for a unified treatment approach. Clinical Child and Family Psychology Review, 12, 234–254. doi:10.1007/s10567-009-0043-6

Tugade, M. M., Fredrickson, B. L., & Barrett, L. F. (2004). Psychological resilience and positive emotional granularity: Examining the benefits of positive emotions on coping and health. Journal of Personality, 72, 1161–1190. doi:10.1111/j.1467-6494.2004.00294.x

Ursache, A., Blair, C., & Raver, C. C. (2012). The promotion of self-regulation as a means of enhancing school readiness and early achievement in children at risk for school failure. Child Development Perspectives, 6, 122–128. doi:10.1111/j.1750-8606.2011.00209.x

Weems, C. F., & Silverman, W. K. (2006). An integrative model of control: Implications for understanding emotion regulation and dysregulation in childhood anxiety. Journal of Affective Disorders, 91, 113–124.

Weems, C. F., Silverman, W. K., Rapee, R. M., & Pina, A. A. (2003). The role of control in childhood anxiety disorders. Cognitive Therapy and Research, 27, 557–568. doi:10.1023/A:1026307121386

Weems, C. F., & Stickle, T. R. (2005). Anxiety disorders in children: Casting a nomological net. Clinical Child and Family Psychology Review, 8, 107–134. doi:10.1007/s10567-005-4751-2

Professional Counseling for Children With Sensory Processing Disorder

Emily Goodman-Scott, Simone F. Lambert

Sensory processing disorder is a complex neurological disorder affecting approximately 5–17% of the population, yet professional counselors often misunderstand and misdiagnose this disorder. A child’s academic, emotional and social functioning can be substantially impacted by sensory processing disorder; early diagnosis and treatment is crucial. In this article, the authors describe the disorder, discuss its impact on children and their families, and provide recommendations and resources for both mental health counselors and school counselors to utilize when serving this unique population with special needs. A case study is included, in addition to suggestions for treatment collaboration and advocacy on behalf of clients with sensory processing disorder.

 Keywords: Sensory processing disorder, special needs, children, school counselors, mental health counselors

 

Children experience the world through their senses—the sound of the air conditioner running in their classroom, the feel of a chair under their legs, the sight of a colorful wall, the smell of food cooking, the muscle movement used to pick up a toy. The typical child can accurately perceive, process and respond to the myriad stimuli in their environment, focusing on important stimuli, such as a parent’s voice, and filtering out unimportant ones, such as a humming refrigerator. For other children, the same environment and accompanying stimuli can be uncomfortable, overwhelming, unnoticeable and even frightening. Researchers estimate that approximately 5–17% of the population has sensory processing disorder (SPD), a neurological disorder in which sensory input is irregularly sensed, processed, organized, and responded to, creating sensory challenges that negatively impact daily functioning (Ahn, Miller, Milberger, & McIntosh, 2004; Ben-Sasson, Carter, & Briggs-Gowan, 2009). As a result of poor sensory processing, individuals with SPD may overreact or underreact to stimuli (Byrne, 2009; Dunn, 1997, 2001; James, Miller, Schaaf, Nielsen, & Schoen, 2011; Katz, 2006; Miller, Anzalone, Lane, Cermak, & Osten 2007; Walbam, 2013; Withrow, 2007). SPD is a lifelong disorder; while typically developing children gain the ability to increasingly suppress stimuli with age, children with SPD tend to struggle throughout their lifetime (Davies & Gavin, 2007), particularly if SPD is unidentified, misdiagnosed or inaccurately treated.

 

Professional counselors are called to accurately diagnose and treat clients’ mental health and co-occurring disorders (American Counseling Association [ACA], 2014). However, SPD is widely unrecognized and misdiagnosed in the counseling field (Collier & Falls, 2010; Katz, 2006; Murphy, 2011; Withrow, 2007). With increasing research supporting the legitimacy of the SPD diagnosis (e.g., Chang et al., 2014; Davies & Gavin, 2007; Owen et al., 2013), counselors can be on the forefront of screening and providing counseling services to children with SPD. This article will provide readers with background information on SPD, implications for clinical mental health and school counseling practice, a case study example, and recommendations for future professional education, advocacy and research. In the literature, SPD has been referred to by similar terms such as sensory integration disorder or categorized by subtype (e.g., sensory modulation disorder). However, the term sensory processing disorder (SPD) will be utilized in this article, since SPD is the most prevalent term used in recent years (Miller, Nielsen, Schoen, & Brett-Green, 2009). Similarly, we will use the term sensory processing to also encompass sensory integration, as they are often used interchangeably in the literature.

 

Background

 

     The most commonly known senses are auditory (sound), olfactory (smell), tactile (touch), visual (sight) and gustatory (taste); two less known senses are proprioception and the vestibular sense (James et al., 2011; Katz, 2006; Withrow, 2007). Proprioception is a sense found in muscles, tendons and joints that deciphers bodily awareness and coordinated movements. The vestibular sense is located in the inner ear and provides sensory input regarding one’s balance and gravity. Sensory processing is a complex neurobiological process in which individuals’ seven senses perceive information or stimuli from the environment, sending data to the brain to interpret, process and respond to; the senses and brain are constantly engaged in a process of perceiving, interpreting, processing, and responding to environmental stimuli (Byrne, 2009; Katz, 2006; Miller et al., 2009; Parham & Mailloux, 2015; Walbam, 2013; Withrow, 2007). Sensory processing is a developmental process, and thus especially crucial in the children’s first 10 years of life (Ayres, 1979). In summary, a typically developing child may easily and accurately perceive and process environmental stimuli, yet this is not the case for all children.

 

Sensory processing has been well studied in the occupational therapy profession during the last 50 years, beginning with the groundbreaking work of Dr. A. Jean Ayres, occupational therapist, psychologist and neuroscientist (Parham & Mailloux, 2015). During the last several decades Ayres and others discovered patterns of atypical sensory processing in children, which have collectively come to be labeled as SPD. “Sensory processing disorder is a heterogeneous condition that includes a variety of subtypes. Individuals with the disorder have impaired responses to, processing of, and/or organization of sensory information that effects [sic] participation in functional daily life routines and activities” (Miller et al., 2009, p. 1). Further, Parham and Mailloux (2015) described SPD as “patterns that emerge developmentally . . . and are thought to reflect subtle neural processing differences involving sensory and motor systems” (p. 266). Thus, children with SPD struggle with the neurobiological cycle of receiving, sending, processing and responding to stimuli, and they experience a severity that negatively impacts their daily functioning (Ayres, 1979; Davies & Gavin, 2007; Owen et al., 2013; Parham & Mailloux, 2015). As a result of skewed sensory processing, individuals with SPD may overreact or underreact to stimuli, perceiving stimuli to much greater or lesser degrees than peers (Byrne, 2009; Dunn, 1997, 2001; James et al., 2011; Katz, 2006; Miller et al., 2007; Walbam, 2013; Withrow, 2007). For example, a crowded indoor playground could be loud to one child, but frightening or even physically painful for a child with auditory sensitivities. While a typical child may get dizzy from spinning around, a child with an underdeveloped vestibular system may rarely become dizzy and seek spinning to feel soothed.

 

Although children with SPD may have neurological similarities, SPD is a highly individualistic disorder that presents differently in each child and can be described by corresponding subtypes (Dunn, 1997, 2001; James et al., 2011; Murphy, 2011; Walbam, 2013; Withrow, 2007). While there is consensus on an overarching definition for SPD, there is not a consistent nosology for describing the subtypes (Miller et al., 2009). Proposed nosologies of SPD subtypes typically include hyposensitivity, hypersensitivity and sensory-seeking subtypes (Ayres, 1979; Dunn, 1997, 2001; Interdisciplinary Council on Developmental and Learning Disorders, 2012; James et al., 2011; Katz, 2006; Miller et al., 2007; Walbam, 2013; Zero to Three, National Center for Infants, Toddlers and Families, 2005).

 

Subtypes

Those with hyposensitivities, one subtype of SPD, often have a high threshold for sensation, are under-sensitive, and receive or process too few stimuli (Dunn, 1997, 2001; James et al., 2011; Katz, 2006; Walbam, 2013; Withrow, 2007). A child with hyposensitivities may seem to have poor social skills and miss social cues; some behavioral examples include not hearing a teacher calling his or her name, being unaware of food on the face, or lacking culturally appropriate personal space. Social skill deficits can negatively impact children’s friendships and group participation in both academic and social environments (Dunn, 1997; Kranowitz, 2005; Withrow, 2007).

 

Children with hypersensitivities, a second subtype of SPD, have a low threshold for sensation and may receive an overwhelming amount of stimuli, be unable to prioritize their sensory messages and be easily overstimulated (Dunn, 1997, 2001; James et al., 2011; Katz, 2006; Walbam, 2013; Withrow, 2007). As a coping technique against stimuli perceived as uncomfortable and even painful, children with hypersensitivies may have heightened alertness, act aggressively toward others in response to perceived threats, and engage in behavioral outbursts and rigid routines in attempts to avoid or escape stimuli (Dunn, 1997; Withrow, 2007). These children may be described as generally anxious, aggressive, distracted or unfocused, or as picky eaters.

 

Lastly, some children with a third subtype of SPD crave and actively seek sensory input and increased stimuli (Dunn, 1997, 2001). These children may seek constant movement to receive sensations from their environment, and exhibit behaviors including running, jumping, chewing, tapping, humming and squeezing (Dunn, 1997, 2001). Individuals with sensory-seeking behaviors may appear impulsive, unpredictable, and have inappropriate personal space which may negatively impact academics and social relationships. Children who seek sensations may be described as rambunctious, aggressive, or bouncing off the walls (sometimes literally). They may seek spicy foods and not be bothered by intense flavors.

 

Sensitivities and sensation seeking occur on a spectrum from mild to severe (James et al., 2011). Furthermore, these variations can present differently in each of the seven senses (Dunn, 1997, 2001), and children can even experience both hypersensitivities and hyposensitivities within the same sense (Withrow, 2007). This circumstance may baffle parents, who question how a child can watch a movie at a loud volume at home, yet be unable to tolerate the noise of a crowded restaurant. Children and the adults around them may need assistance recognizing children’s placement on the hyposensitivity, hypersensitivity and sensory-seeking spectrums before, during and after an event which can facilitate children successfully coping and thriving in various settings.

 

Prevalence

Researchers have estimated that SPD occurs in approximately 5–17% of children (Ahn et al., 2004; Ben-Sasson et al., 2009). In one study examining the prevalence of SPD in children 4–6 years old, the parents of incoming kindergarten students in one U.S. school district (N = 1,796) were asked to complete the Short Sensory Profile, a parental-report screening tool used to determine parents’ perceptions of SPD correlates (Ahn et al., 2004). Approximately 14% of those who completed the survey (with a 39% return rate) met the criteria for SPD. However, researchers conservatively estimated that if all non-responders were free from meeting the SPD criteria, then approximately 5% of this population would meet the screening criteria for SPD. Thus, the number of incoming kindergarten students who met the criteria for SPD based on parental perceptions ranged from 5–14%. Similarly, Ben-Sasson et al. (2009) used a longitudinal birth cohort sample of children to study sensory over-responsivity (SOR) and related correlates. They found that nearly 17% of the 7–11 year olds in their study (N = 925) had clinically significant elevated SOR scores. However, these researchers believe the number to be a conservative estimate of the population, as children with diagnosed medical and developmental conditions were excluded from the study.

 

Secondary Symptoms

All areas of a child’s life can be impacted by SPD (Walbam, 2013; Withrow, 2007). In addition to children presenting primary symptoms of the disorder, they often face a host of secondary emotional and behavioral difficulties as a result of the disorder, such as frustration, loneliness, low self-esteem, a greater risk for strained peer relationships, discouragement, and social, emotional and academic challenges (Champagne & Koomar, 2012; Katz, 2006; Miller, Nielsen, & Schoen, 2012; Walbam, 2013; Withrow, 2007). Also, those with SPD tend to be more likely to struggle with depression and anxiety than their typically developing peers (Miller et al., 2012) and may need assistance with self-regulation (Katz, 2006). These secondary symptoms may result from attempted self-regulation due to negatively perceived sensory stimuli as well as feelings of isolation and being misunderstood due to undiagnosed, untreated and mistaken symptoms (Miller et al., 2012; Withrow, 2007). In this article, we describe the experiences of children with SPD as comparable to those of children with special needs including disabilities and chronic illnesses.

 

Diagnosis and Treatment

Early SPD diagnosis and treatment is crucial in assisting children with both primary and secondary SPD symptoms (Ben-Sasson et al., 2009; Byrne, 2009; Miller, 2006). SPD diagnosis and treatment early in life is highly impactful on a child’s developing brain and behavioral symptoms (Ben-Sasson, et al., 2009; Miller, 2006). While occupational therapists (OTs) are charged with diagnosing and treating the primary symptoms and underlying conditions associated with SPD, counselors need to be aware of SPD in order to appropriately screen for, avoid misdiagnosing, make appropriate referrals for, and treat the secondary symptoms related to SPD.

 

Occupational therapy. Typically, OTs evaluate for and treat SPD (Castaneda, Olson, & Radley, 2013; Champagne & Koomar, 2012; Katz, 2006; Parham & Mailloux, 2015; Walbam, 2013). Children are often referred to OTs by parents, teachers and physicians (Parham & Mailloux, 2015); however, before making an OT referral, physicians need to rule out medical conditions and medication side effects. OTs assist people with daily living and occupational skills, and they are trained in mental and physical disorders (Castaneda et al., 2013). Since school is “work” for children, OTs help children with SPD to function more effectively in their academic work and social living skills. OTs can be school-based or work in community or hospital settings (Castaneda et al., 2013).

 

OTs use several strategies to assess for SPD, including interviews and questionnaires, direct observations (e.g., naturalistic and structured clinical) and standardized testing (Parham & Mailloux, 2015). SPD diagnoses often begin with the use of a screening tool to determine the existence of symptoms signifying possible sensory irregularities. The Sensory Profile 2 (Dunn, 2014) is a standardized, parental-report tool for evaluating children’s sensory processing patterns in various environments and requires a B-level qualification to administer (Dunn, 2014). The Sensory Integration and Praxis Tests (SIPT) is a popular, recommended and standardized comprehensive test for measuring sensory integration and requires a C-level qualification to administer (Ayres, 1989). The SIPT was normed on approximately 2,000 children in North America and is considered a valid and reliable assessment.

 

The sensory integration approach to occupational therapy is commonly used to treat SPD; the overarching goal of this intervention is to enable a child’s nervous system to more efficiently process and respond to sensory information (Parham & Mailloux, 2015). Occupational therapy is highly specialized based on the child’s unique needs and diagnosis. Further, occupational therapy also may include the use of a sensory diet—an individualized program for children with sensory challenges including a specific combination of sensory activities throughout the day (Parham & Mailloux, 2015). A sensory diet provides a wide range of sensory input; for example, activities may evoke the senses through music, new smells, visual stimulus, as well as “movement, heavy work, or tactile stimulation” (Hall & Case-Smith, 2007, p. 212).

 

Clinical diagnosis. The occupational therapy profession has treated SPD for decades. Furthermore, the SPD Scientific Work Group, including approximately 40 interdisciplinary research scientists from various specialties (e.g., neurology, pediatrics, occupational therapy, psychiatry, autism, psychology) has regularly met since 2002 with the aim of studying SPD; members’ efforts have been funded through both the Wallace Research Foundation and National Institutes of Health (SPD Foundation, 2014). However, much controversy has existed regarding SPD as an independent disorder, particularly in the psychiatry and psychology professions, whose members have raised the following criticisms: “(1) an absence of formal diagnostic criteria, (2) high prevalence among children with developmental disorders such as autism spectrum disorders . . . (3) unknown etiology, and (4) lack of epidemiological evidence related to this condition” (Ben-Sasson et al., 2009, p. 706). These criticisms will be addressed in the subsequent paragraphs.

 

Diagnostic criteria. Sensory disorders are found both in the Diagnostic Manual for Infancy and Early Childhood (Interdisciplinary Council on Developmental and Learning Disorders, 2012) and the Zero to Three’s Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood-Revised (Zero to Three, 2005). For example, the Zero to Three was created by an interdisciplinary group of researchers and clinicians to complement the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) with a specific focus on the unique development of and disorders found among infants and young children. This nosology includes two sensory-related disorders: Hyposensitive/Underresponsive (420) and Sensory Stimulation-Seeking/Impulsive (430), describing the sensory reactivity patterns, motor patterns and behavioral patterns of each disorder (Zero to Three, 2005).

 

The APA reviewed SPD for consideration in the DSM-5 (Levingston, 2014; Murphy, 2011) and groups such as the SPD Scientific Work Group lobbied for its inclusion (SPD, 2012, 2014). The full diagnosis of SPD was not included in DSM-5 reportedly due to lack of research (Levingston, 2014). However, the new Avoidant/Restrictive Food Intake Disorder does recognize that sensory aspects of food can cause a significant food disturbance (e.g., texture, smell, spiciness; APA, 2013). Further, in the DSM-5 the APA recognized sensory issues as a part of autism spectrum disorder (ASD), including: “hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment” (APA, 2013, p. 50). While the DSM-5 does not recognize SPD as an individual disorder, we find it promising that SPD was considered for inclusion and that sensory issues were added to the most recent DSM. The DSM has evolved and will likely continue to evolve based on research advances (APA, 2013) and we are hopeful that SPD will be considered for inclusion in the next edition of the DSM, especially with recent research advances (e.g., Chang et al., 2014; Owen et al., 2013).

 

In addition to the DSM, the 10th revision of the International Statistical Classification of Diseases (ICD-10; World Health Organization, 2013) and the ICD-9 (Centers for Disease Control and Prevention, National Center for Health Statistics, 1991) are other commonly used nosologies. Although the ICD does not specifically identify sensory issues, OTs may use the following codes to diagnose clients: lack of normal physiological development, unspecified (783.40; ICD-9); other symptoms involving nervous and musculoskeletal systems (781.99; ICD-9), and unspecified lack of expected normal physiological development in childhood (R62.50; ICD-10; E. Smolak, personal communication, January 15, 2015). Thus, professionals can use ICD codes related to SPD.

 

SPD research. Researchers have determined distinct patterns among children with SPD varying from those among their typically developing peers. Specifically, when comparing children with clinically determined atypical sensory processing to their typically developing peers, researchers found that the former exhibited differences in their physiological responses to sensory stimuli (McIntosh, Miller, Shyu, & Hagerman, 1999), parasympathetic nervous system functioning (Schaaf et al., 2010; Schaaf, Miller, Seawell, & O’Keefe, 2003), and differences in both behavioral and physiological measures (Schoen, Miller, Brett-Green, & Nielsen, 2009). Additionally, Davies and Gavin (2007) and Gavin et al. (2011) found differences in brain activity between children with and without SPD using electroencephalography. In fact, “brain activity correctly distinguished children with SPD from children who were typically developing with 86% accuracy” (Davies & Gavin, 2007, p. 176). Finally, in a recent study (N = 40), Owen et al. (2013) found neurological differences in brain structure between children with and without SPD, specifically stating:

 

Children with SPD show specific reduction in the white matter microstructure primarily affecting posterior cerebral tracts. . . . These findings suggest that children with SPD have a specific imaging biomarker for their clinical disorder and the pattern of their shared structural difference. (p. 850)

 

Significant sensory abnormalities (e.g., SPD) can be comorbid with several childhood clinical disorders such as ASD, attention-deficit/hyperactivity disorder (ADHD), anxiety disorders, depression, Fragile X syndrome and obsessive-compulsive disorder (Ghanizadeh, 2011; Goldsmith, Van Hulle, Arneson, Schreiber, & Gernsbacher, 2006; Tomchek & Dunn, 2007; Van Hulle, Schmidt, & Goldsmith, 2011). At the same time, researchers are suggesting that SPD is a separate and distinct disorder. For example, when studying youth with ASD and SPD, Schoen et al. (2009) demonstrated differences in sympathetic nervous system functions and sensory-related behaviors between children in the two samples, while Chang et al. (2014) reported differing patterns of brain connectivity in adolescents with the two separate diagnoses. In addition, Miller et al. (2012) studied differences between youth with SPD, ADHD and the two dual diagnoses by using several parental-report instruments and measuring physiological reactions to sensory stimuli by electrodermal response. They found that participants with ADHD had greater inattention and participants with SPD had the most sensory issues, while those with both diagnoses experienced inattention and fewer sensory issues than those who only had SPD. Further, participants with SPD had greater physiological or electrodermal reactivity to sensory stimuli than participants with ADHD (Miller et al., 2012). Overall, differences seem to exist between participants with SPD and those with similar but varying clinical diagnoses (e.g., ADHD and ASD), suggesting SPD as an individual disorder.

 

Etiology. While the etiology of SPD is still largely unknown, several researchers believe that SPD may have a genetic basis (e.g., Goldsmith et al., 2006; Miller et al., 2009; Owen et al., 2013; Van Hulle et al., 2011). For example, Goldsmith et al. (2006) studied the tactile and auditory defensiveness, temperament, and behavior problems of toddler-aged twins as determined by parent reports. Researchers determined moderate genetic influences with tactile defensiveness, leading them to suggest more research investigating the heritability of SPD and sensory issues.

 

Overall, although SPD is controversial, there is substantial evidence for SPD as a distinct disorder in children. According to the APA (2013),

 

A mental disorder is a syndrome characterized by clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning. Mental disorders are usually associated with significant distress or disability in social, occupational, or other important activities. (p. 20)

 

Based on the literature review, we believe that SPD meets the APA’s criteria for a mental health disorder, due to an irregular neurological pattern of receiving, sending, processing and responding to stimuli, which results in impairment to an individual’s regular behavioral and emotional functioning.

 

Professional counseling. SPD has received some, albeit limited recognition in the counseling field (e.g., Collier & Falls, 2010; Katz, 2006; Withrow, 2007), including an article featured in Counseling Today (Murphy, 2011). However, SPD seems to be widely unrecognized in the counseling profession. Counselors may often misdiagnose this neurological condition due to clients’ highly individualized presentations, as well as SPD symptoms mirroring those of other disorders (Collier & Falls, 2010; Katz, 2006; Murphy, 2011; Walbam, 2013). SPD can present as ADHD through impulsive and inattentive behaviors; ASD through social deficits, rigidity and sensory symptoms; and depression and anxiety through withdrawn and lethargic behaviors. Well-known author and OT Carol Kranowitz wrote the following:

 

Many parents, educators, doctors, and mental health professionals have difficulty recognizing SPD. When they don’t recognize the problem, they may mistake a child’s behavior, low self-esteem, or reluctance to participate in ordinary childhood experiences for hyperactivity, learning disabilities, or emotional problems. Unless they are educated about SPD, few people understand that bewildering behavior may stem from a poorly functioning nervous system. (2005, p. xxiv)

 

SPD and sensory challenges are often unrecognized, misdiagnosed and considered solely behavioral, psychological or emotional issues (Parham & Mailloux, 2015).

 

An accurate diagnosis is imperative for client treatment and is included as follows in the 2014 ACA Code of Ethics, section E.5.a.: “Counselors take special care to provide proper diagnosis of mental disorders” (ACA, 2014, p. 11). Counselors are ethically required to thoughtfully consider mental diagnostic possibilities and to accurately diagnose clients. However, medical and mental disorders can be commonly misdiagnosed, especially when many disorders have similar symptoms and overlapping criteria (Pollak, Levy, & Breitholtz, 1999). Misdiagnoses may have long-term ramifications for individuals, including ineffective treatment and secondary concerns due to unmet needs, such as anxiety, depression, low self-esteem, and poor academic and social functioning (Katz, 2006; Kinnealey & Fuiek, 1999; Miller, 2006, Miller et al., 2012; Withrow, 2007). Lack of an accurate diagnosis also can lead to poor use of resources and harmful or even fatal client outcomes (Pollak et al., 1999). In order to uphold the ACA’s ethical standards for accurately diagnosing clients, as well as to meet clients’ needs, it is imperative that counselors are aware of SPD and work in tandem with other service providers when warranted in order  to ensure that each client receives an accurate diagnosis and treatment.

 

Counselor Implications

 

All Professional Counselors

Given the prevalence of SPD, counselors are likely already working with clients who have SPD. Thus, counselors across settings need to be aware of SPD and related counseling implications. Since early intervention is preferred, counselors who work with children should be at the forefront for recognizing and addressing SPD in session. This section will focus on the following: awareness and education, screening and diagnosis, treatment team, treatment goals, counseling strategies, and counseling accommodations.

 

Awareness and education. First and foremost, counselors must possess knowledge of SPD as a neurological disorder and awareness of SPD characteristics in children. There is limited counseling-related SPD literature (e.g., Collier & Falls, 2010; Katz, 2006; Murphy, 2011; Withrow, 2007), and in our experiences as counselor educators and practitioners, we have seen very little SPD information in counseling textbooks or at counseling conferences. Thus, counselors may need to seek educational and training opportunities outside the counseling field in order to stay abreast of SPD.

 

Screening and diagnosis. Counselors can screen for SPD through the process of differential diagnosis to see if the symptoms (a) are part of a separate mental health diagnosis, (b) indicate SPD misdiagnosed as another disorder or (c) are co-occurring (Byrne, 2009). Screening and diagnosis are complicated due to SPD often co-occurring with other mental health disorders (Walbam, 2013). Additionally, context is critically important when counselors identify diagnostic criteria, as well as triggers and antecedents to emotional and behavioral responses. For example, a child who presents characteristics of ADHD (e.g., impulsiveness and hyperactivity) also should be considered for SPD, as this child could lack physical stimulation and seek sensory input to self-modulate. Dr. Roianne Ahn, a licensed psychologist, SPD researcher and staff member at the Sensory Therapies and Research Center provides training to mental health clinicians regarding recognizing SPD in clients. When clinicians suspect that a child has sensory abnormalities, Dr. Ahn encourages them to use a parental-report screening checklist (e.g., Appendix A: Sensory Processing Disorder Checklist or the Sensory Profile 2) to initially screen for SPD symptoms and then recommend a formal occupational therapy evaluation (R. Ahn, personal communication, November 7, 2014). With the high prevalence of SPD, professional counselors may want to consider including a screening checklist in initial client paperwork.

 

Treatment team. Counselors can consult and collaborate with stakeholders through the use of a treatment team (Katz, 2006; Murphy, 2011; Walbam, 2013). The purpose of the treatment team is to collaborate on the child’s needs and treatment across various settings, gaining the perspectives of diverse stakeholders. A treatment team can be comprised of the counselor (e.g., school counselor, mental health counselor), OT, parents or caregivers, and teachers. The treatment team may include the child’s pediatrician and potentially a nutritionist when appropriate. Counselors can play a vital role as part of a treatment team by coordinating the interdisciplinary team. Also, family involvement is crucial—parents or caretakers often know their child best, children are heavily impacted by their families, and parents or caretakers often advocate for their child on a long-term basis.

 

Through the collaborative treatment team, counselors can identify and advocate for resources for children with SPD and their families in order to improve their daily functioning (Walbam, 2013; Withrow, 2007). Treatment teams can discuss children’s needs, accommodations and resources, ensuring that stakeholders are working collaboratively to serve the child. For example, one function of the treatment team may be consultation to discuss the child’s sensory diet in multiple settings, such as chewing gum to remain attentive in class or receiving calming deep pressure before school in the morning (Parham & Mailloux, 2015).

 

Treatment goals. Counseling treatment goals can incorporate suggestions from the treatment team. For instance, counseling treatment goals may focus on children’s emotions, cognitions and behaviors pertaining to SPD (Kranowitz, 2005). Children with SPD may have a number of mental health concerns including anxiety, depression, low self-esteem, poor social skills and frustration (Champagne & Koomar, 2012; Katz, 2006; Miller et al., 2012; Walbam, 2013; Withrow, 2007). Similar to those with chronic illness (Cheu, 2013), children with SPD may have additional concerns including fear, grief, shame, anger or frustration. Furthermore, children may misunderstand SPD; thus, educating children and normalizing their experiences may be appropriate treatment goals (Withrow, 2007).

 

Other treatment goals can include the child adjusting to the diagnosis of SPD and identifying strategies for coping in social situations when SPD symptoms often occur (Murphy, 2011). For example, although home environments may be easily controlled to meet the child’s sensory needs, children with SPD may need to cope with uncontrolled environments, such as a crowded grocery store or an odorous and loud public restroom. Thus, counseling treatment may include systematic desensitization—children increasingly coping with uncomfortable stimuli through increased exposure. Counseling can assist with behavioral, social and emotional symptoms related to SPD (Kranowitz, 2005), in addition to other disorders that may co-occur including anxiety, depression, ASD, attention-deficit disorder and learning disorders (Ostovar, 2009). Further, one disorder can exasperate another (i.e., the child may have difficulty adjusting to a new environment if there is a change in sensory input, such as street noise by the child’s bedroom window).

 

Counseling strategies. Counselors can provide individual, group and family counseling modalities (Withrow, 2007) using solution-focused and cognitive-behavioral techniques to address children’s mental health needs and co-occurring disorders. For example, through individual counseling, children may increase their coping skills and self-esteem; through group counseling, children can improve their social skills. Further, counselors can assist clients to understand their disorder (Withrow, 2007), adjust to their limitations and capitalize on their strengths (Miller, 2006). Through the use of psychoeducation and bibliotherapy (see Appendix B), counselors can educate children about SPD, normalizing their experience. Further, by focusing on the child’s strengths, counselors can emphasize the positives of SPD. For example, children who seek sensory input from spinning may excel in gymnastics or ice skating, while those who need physical input may thrive in contact sports.

 

Some mental health issues, such as children’s anxiety, can be exacerbated by contextual factors like an unpredictable environment that may occur in everyday life situations as well as at special events (Ostovar, 2009). Taking a systems approach, counselors can work with family members and other service providers (e.g., teachers) to increase the predictability and children’s understanding of their environment (Withrow, 2007). Thus, counselors can assist in identifying sensory triggers and establishing accommodations, while simultaneously addressing secondary emotional and behavioral symptoms that occur in various settings and situations.

 

Counseling accommodations. In conjunction with the treatment team’s recommendations, counselors can make a number of small accommodations during their counseling sessions to support children with SPD as they engage in the counseling process (Withrow, 2007). First, counselors should be mindful of environmental stimuli in their offices, such as bright lights, highly decorated offices or intense smells, which may be distracting for a child with SPD. Counselors can keep smells to a minimum, for example, by not wearing perfume and asking office mates to refrain from using incense or scented candles. Next, varied seating options can increase children’s comfort, as their needs may vary from firm to soft cushions and from smooth to more textured upholstery.

 

Similar to OTs (Kranowitz, 2005), counselors working with young children typically have numerous toys and materials to use in therapy (Landreth, Ray, & Bratton, 2009). Counselors may find that covering a shelf and only displaying a couple of items at once reduces children’s feelings of being overwhelmed. Likewise, many children may enjoy a variety of arts and crafts materials, yet some children with SPD may not be able to tolerate getting glue or paint on their hands. Using a paintbrush for glue application and using hand wipes or a nearby sink to clean their hands may allow children to fully engage in the activity. In consultation with an OT, alternative materials can be selected. Based on the client’s needs, therapeutic putty could be substituted for a regular modeling compound to provide more sensory input; a dry food box (e.g., uncooked rice, beans, pastas) could be substituted for a traditional sand tray to provide more tactile input through different textures; and markers with or without scents could be used as part of a child’s sensory diet.

 

In consulting with the treatment team, the counselor may learn of the child’s need to implement other movement strategies as part of a sensory diet to increase his or her participation during counseling. These movements may include use of a rocking chair, proprioceptive exercises or a fidget. Balancing counseling interventions with attending to sensory inputs may help the child best focus during counseling sessions.

 

Mental Health Counselors

Play-based strategies. Children, particularly young children, express their emotions, thoughts and experiences through the language of play (Trice-Black, Bailey, & Riechel, 2013). Children with SPD may have qualitatively different playing styles, which may affect their social development (Cosbey, Johnston, Dunn, & Bauman, 2012). Counselors can foster the achievement of social development therapeutic goals by examining the nature of children’s play and the activities that children find most fulfilling. Cosbey et al. (2012) reported that children with SPD tend to participate in more solitary play, less complex play and greater overall conflict in play when compared to peers’ play. Therefore, social development and play strategies may be a focus of counseling for children with SPD. Furthermore, Cosbey, Johnston, and Dunn (2010) recommended three potential goals in working with children with SPD: (a) identify activities that bring joy and meaning to the individual child, (b) strategize ways that the child can successfully engage in the activity, and (c) use these activities to build his or her social circles with peers. Similarly, counselors may use such activities to assist children with SPD in improving relationships and interactions with family members.

 

Family counseling strategies. A substantial aspect of serving a child with SPD involves working with and supporting the people important in the child’s life, such as parents, siblings and other family members (Parham & Mailloux, 2015). When working from a family systems perspective, counselors should recognize the adjustment process for both parents and siblings. Just as children with SPD need to adjust to the diagnosis, so do their family members. The SPD diagnosis may bring a sense of relief to parents who have spent a long journey attempting to find an accurate diagnosis for their child (Parham & Mailloux, 2015). Some parents may feel grief and loss when their child is diagnosed with special needs, guilt for not obtaining the diagnosis sooner, and overwhelmed by navigating a new world of treatment expenses and accommodations (Anderson & Davis, 2011; Grossman & Okun, 2009; Marshak, Dandeneau, Prezant, & L’Amoreaux, 2010). Gourley, Wind, Henninger, and Chinitz (2013) found that parental stress was positively correlated with SPD severity, and that parents whose children had SPD had greater stress than those who had children without SPD. Thus, counselors can assist parents in processing their emotions, learning coping strategies, developing a plan of action and gaining a better understanding of SPD. Through psychoeducation (see suggestions in Appendix B), parents can learn about SPD and counselors can teach parents how to advocate for their children in various settings and situations (e.g., birthday parties, classroom activities, family gatherings; Ostovar, 2009; Withrow, 2007).

 

Another of the counselor’s essential tasks may be providing support for parents (Cohn, May-Benson, & Teasdale, 2011), which can be accomplished through a local support group for parents of children with SPD or through family therapy. As the severity of SPD increases, so does the level of support needed by parents (Cohn et al., 2011). Cohn et al. (2011) found a significant correlation between an increase in a child’s SPD severity and a decrease in parents’ perceived parental competence. Informing parents about the benefits of proper treatment may not only increase the likelihood of children receiving the needed treatment, but also decrease parents’ stress and anxiety related to parenting a child with special needs. Finally, family counseling may include treatment goals that center on establishing balance for the family system, as many families may have spent a large amount of family time and resources seeking an accurate diagnosis for their child (Gladding, 2015).

 

Siblings of children with special needs such as SPD may be negatively impacted in various ways, including greater likelihood of psychological or behavioral concerns, stressed relationships with parents, and missing parental attention (Anderson & Davis, 2011; Cohen, 1999). Engaging siblings in counseling can assist all the children in the family with adapting to the new family norms, routines and rules. For example, siblings can benefit from learning more about SPD (Parham & Mailloux, 2015) and processing their reactions to the SPD diagnosis, treatment and changes to the family system. Depending on the siblings’ ages and developmental levels, understanding SPD and the related issues may be difficult for them to comprehend. For example, siblings’ interactive play may change significantly once triggers are identified for the child with SPD. Siblings may need to process their emotions in their own space; thus, a referral to a sibling support group or individual counseling may be warranted.

 

School Counselors

According to the American School Counselor Association (ASCA, 2013), school counselors are charged with serving all students, including students with disabilities and special needs. School counselors can serve students through increasing their own awareness of SPD, consulting and collaborating with stakeholders, advocating for necessary student services and accommodations, and providing students with individual and small group counseling (ASCA, 2013). Thus, school counselors can apply these strategies to their work with children who have SPD.

 

Education, consultation and collaboration. To serve students with SPD, school counselors should educate themselves about the disorder and be vigilant about the signs and symptoms. School counselors can consult with other school professionals such as the OT and parents or caretakers if they suspect SPD. As teachers and family members may possess little knowledge of SPD, school counselors can educate, consult and collaborate with these stakeholders (ASCA, 2013) to increase their understanding of the disorder and to learn to best support the child with SPD.

 

Accommodations. The 2008 amendments of Section 504 of the Rehabilitation Act of 1973 constitute a “federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education” (U.S. Department of Education, 2013, Introduction, para. 2), including students in public schools. To be eligible under Section 504, students must have a confirmed physical or mental impairment that substantially impacts their functioning (U.S. Department of Education, 2013). If a student’s SPD significantly impedes his or her school participation and learning, that student may be eligible for Section 504, including relevant accommodations, supports and a documented plan. School counselors can advocate for students receiving services under Section 504, as well as assist students and parents in navigating the educational system as they seek services.

 

To promote academic performance and social and emotional functioning in schools, 504 services vary based on the unique needs of each student. Accommodations should be individualized and based on information gathered from the student, family, teacher and diagnosing professionals. Once the student’s sensory triggers are identified, the school counselor can examine each aspect of the child’s day for potential triggers and modifications; small changes can make a significant difference. SPD accommodations in the classroom may include preferential seating, possibly with a larger personal space circumference (e.g., the student’s own table for classroom work and testing), sensory breaks in the classroom, “heavy work” (e.g., delivering books to the library), increased time for assignments and tests, and a quiet location for testing. Some students with poor muscle coordination may require accommodations for underdeveloped fine motor skills, such as using a mechanical pencil for short assignments, a computer for longer writing assignments and pencil grips. In coordination with an OT, other accommodations may include a weighted vest or lap pillow, a balance ball chair instead of a traditional seat, and fidgets or stress balls to help increase attending behavior, reduce stress and increase hand muscle strength. If available and as needed, students can meet with a school-based OT to further address SPD symptoms in the classroom.

 

In addition to focusing on student accommodations for accessing the core curriculum, students with SPD may struggle with the elective or “specials” classes, unplanned situations, transitions and unstructured time outside of the classroom. While many children love playing tag during recess or physical education (P.E.), a student who is sensory defensive may dread this and similar activities. Thus, a P.E. accommodation may be engaging in a different noncontact sport. Alternatively, children who need sensory input may have accommodations to complete additional jumping jacks or wall pushes beyond P.E. class. In addition, a child with gross motor skill challenges could receive accommodations to strengthen and develop those areas without being penalized for failure to meet grade-level expectations. With any sport, an OT can assess a child’s physical strengths and challenges, working with P.E. teachers, coaches and parents to select appropriate individual or group activities based on the SPD presentation in each child (Kirkpatrick, 2012).

 

As previously mentioned regarding play-based techniques, some creative arts activities may be troublesome for children with SPD. Accommodations in art class should ensure that students with SPD participate to the best of their ability, and receive modified assignments and grading protocols (e.g., extra time to complete assignments). Likewise, students in music class may need to utilize their noise reduction headphones. Finally, school counselors should be mindful of students’ schedules, advocating for “specials” classes to be spaced out and at the end of the day when possible, as children with SPD who have multiple triggers are apt to have challenges concentrating once back in their regular classroom.

 

Children with SPD may be fearful of unexpected situations due to concern that a sensory trigger will occur. Providing students with advance warning can assist them during these situations. For instance, students can receive advance notice for fire drills and prearranged substitute teachers. The school counselor can check on the students during such triggering events to determine their reactions and ensure that accommodations are implemented. The school counselor can coach children to advocate for themselves in these situations, for example, by asking a substitute teacher to reduce the classroom noise level, or wearing noise-canceling headphones during fire drills.

 

Students with SPD may benefit from accommodations assisting them with daily school transitions. For example, a visual reminder (e.g., written schedule) may help reduce students’ anxiety surrounding transitions. To preserve personal space when transitioning between classes, younger students can receive preferential order in line, while older students can receive permission to walk in the hallways immediately before or after their peers.

 

Children with SPD may find unstructured school time to be difficult due to the magnitude of overwhelming sensory input. School counselors can assist students with SPD by collaborating with them and other stakeholders to create modifications for unstructured school times (e.g., recess, lunch, school assemblies, class parties, bathroom breaks, transportation to and from school). Accommodations may include preferential seating, noise-canceling headphones and decreased time in such situations. Further, students should be provided a safe place to decompress when overstimulated.

 

When annually reviewing 504 plans and adjusting accommodations, school counselors need to be aware that students’ triggers and challenges may change at different developmental and chronological ages. For example, high school students with SPD may require unique accommodations in various situations such as the following: during driver’s education (e.g., not driving with other students in the car), while dissecting frogs in biology or when using odorous chemicals in chemistry. Biological changes in adolescence produce new and potentially triggering smells, such as the P.E. locker room at the secondary level. Thus, school counselors may need to (a) advocate for accommodations to counter these scenarios that may emerge in middle and high school, and (b) further address the emotions related to dealing with SPD symptoms in the classroom and in social situations with classmates that may occur with the onset of adolescence.

 

Counseling. In addition to assisting with accommodations, school counselors can conduct individual and small group counseling for students with SPD in order to help them succeed in school (Collier & Falls, 2010). School counselors can provide counseling to address students’ emotional and mental health concerns, which may include anxiety, depression, low self-esteem, poor social skills and frustration (Champagne & Koomar, 2012; Katz, 2006; Miller et al., 2012; Walbam, 2013; Withrow, 2007). School counseling may address students’ anxiety about school transitions and school-related sensory reactions by teaching students coping skills. School counselor-led counseling can normalize the experience of children with SPD, combating potential feelings of self-consciousness and isolation. Through the use of bibliotherapy and psychoeducation (see Appendix B), students can learn improved self-regulation and organization skills as well as self-advocacy and assertiveness. For example, students can learn to advocate for themselves by participating in their 504 plan meeting, as well as learn to develop strategies for communicating with teachers when becoming overwhelmed by sensory stimuli.

 

When students with SPD receive accommodations and counseling, classmates may express jealousy or frustration, similar to siblings. The school counselor can help process these situations and role-play social interactions in individual or group settings. Further, school counselors can assist teachers in offering sensory modulation strategies for an entire class, in order to prevent the child with SPD from being singled out. The following is a case study of how a counselor can intervene with a child who has SPD.

 

Case Study

 

     Euna is a 6-year-old, second-generation Korean American attending her first year of school as a first-grade student in public school. Her parents are professionals, and she is an only child who had an in-home nanny and no formal preschool. At school, she shows little variation in affect and rarely speaks to peers. However, she and her parents speak at home, often in quiet voices. Euna flinches when touched and her parents describe her as a picky eater and uncoordinated. She does not like school; at home she has daily outbursts prior to departing for the school bus. Euna does not have reciprocal friendships in school and often sits alone in the cafeteria during lunch. Often she requests to visit the nurse to avoid the cafeteria during lunch.

 

Euna visits a mental health counselor for anxiety; this counselor has basic awareness of SPD. After the intake and initial counseling session with Euna, the mental health counselor suspects SPD and gathers additional background information from Euna’s parents as well as a release of information to speak to Euna’s teacher and school counselor. Next, the mental health counselor gathers background information from Euna’s school counselor and teacher about her school functioning. After completing screening checklists (e.g., Appendix A: Sensory Processing Disorder Checklist or the Sensory Profile 2), the mental health counselor and school counselor provide Euna’s parents with an OT referral for formal evaluation and recommend that her parents first speak to the pediatrician; the counselors obtain a release of information to be able to speak with the OT and pediatrician. The OT determines that Euna does have SPD, and through the physical examination, Euna’s pediatrician rules out other potential physiological causes for symptoms. The pediatrician also provides a referral to a nutritionist who can ensure that Euna is obtaining proper nutrition and gradually increase the types and textures of food in Euna’s diet.

 

After consulting with the OT and pediatrician, the school and mental health counselors work together to provide bibliotherapy resources for the family, education for the teacher and school staff, and coping strategies for Euna in school, at home and in the community. They collaborate with the OT to incorporate sensory strategies that will enhance counseling sessions with Euna. Lastly, the school counselor invites the OT and mental health counselor to participate in the development of the 504 plan to provide accommodations for Euna to be successful in school.

 

During the last several years, authors have presented variations of the Euna case study to audiences in counseling classes and conferences, asking for participants’ thoughts on a preliminary diagnosis for further exploration. Common participant responses include trauma, anxiety and school phobia; this is not surprising, as SPD can be easily misdiagnosed as other disorders.

 

Summary and Recommendations

 

SPD is a neurological disorder that impacts the daily functioning of children across settings. Thus, to advocate on behalf of children with SPD in mental health and school settings, counselors need to increase their SPD-related education, advocacy, screening, treatment, stakeholder collaboration and research. First, counselors should become increasingly knowledgeable about and advocate for an increased awareness of SPD within the counseling profession. We recommend that counselors advocate for the inclusion of SPD in diagnostic standards, such as the future edition of the DSM, and in counselor education, professional development and counseling literature. By increasing the counseling profession’s knowledge of SPD, counselors can provide children with more appropriate and earlier treatment interventions.

 

Next, counselors need to effectively screen for SPD and collaborate with parents and other professionals to treat the primary and secondary needs of children with this disorder. Also, counselors can educate stakeholders on SPD, including teachers and parents. By further demystifying and clarifying SPD for professionals and family members, these stakeholders can best support children with SPD, improving their quality of life and achieving treatment goals.

 

Conducting and publishing counseling-related SPD research can add professional credibility and recognition of SPD. In the future, researchers should investigate the following: (a) counselors’ awareness of SPD; (b) mental health, school, and family counseling interventions used for children with SPD; (c) consultation practices with other service providers to serve children with SPD; and (d) perceptions and outcomes of clients with SPD receiving counseling services in an effort to develop future evidence-based best practices. Also, researchers can explore the psychometric properties of instruments used to screen for SPD, perceptions regarding these instruments, and effectiveness of counselors using these instruments. Finally, counselors can conduct interdisciplinary research with OTs, as future SPD research areas outlined by the American Occupational Therapy Association (2014) are related to counseling treatment goals pertaining to SPD (e.g., social communication, anger management, academic performance, behavior issues). When counselors and researchers engage in self-education and professional education, more accurate screening, evidence-based counseling treatment strategies, stakeholder education and collaboration, and research, they advocate for children with SPD across settings and have the potential to dramatically improve the lives of many children.

 

Conflict of Interest and Funding Disclosure

The authors reported no conflict of

interest or funding contributions for

the development of this manuscript.

 

References

Ahn, R. R., Miller, L. J., Milberger, S., & McIntosh, D. N. (2004). Prevalence of parents’ perceptions of sensory processing disorders among kindergarten children. American Journal of Occupational Therapy, 58, 287–293. doi:10.5014/ajot.58.3.287

American Counseling Association. (2014). ACA code of ethics. Alexandria, VA: Author.

American Occupational Therapy Association. (2014). Research opportunities in the area of children and adolescents with challenges in sensory processing and sensory integration. American Journal of Occupational Therapy, 68, 242–244. doi:10.5014/ajot.2014.682003

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

American School Counselor Association. (2013). The professional school counselor and students with disabilities. Retrieved from http://www.schoolcounselor.org/asca/media/asca/PositionStatements/PS_Disabilities.pdf

Anderson, T., & Davis, C. (2011). Evidence-based practice with families of chronically ill children: A critical literature review. Journal of Evidence-Based Social Work, 8, 416–425. doi10.1080/15433710903269172

Ayres, A. J. (1979). Sensory integration and the child. Los Angeles, CA: Western Psychological Services.

Ayres, A. J. (1989). Sensory integration and Praxis tests (SIPT) [Measurement instrument]. Torrance, CA: Western Psychological Services. Retrieved from http://www.wpspublish.com/store/p/2971/sensory-integration-and-praxis-test-sipt 

Ben-Sasson, A., Carter, A. S., & Briggs-Gowan, M. J. (2009). Sensory over-responsivity in elementary school: Prevalence and social-emotional correlates. Journal of Abnormal Child Psychology, 37, 705–716.

doi:10.1007/s10802-008-9295-8

Byrne, M. W. (2009). Sensory processing disorder: Any of a nurse practitioner’s business? Journal of the American Academy of Nurse Practitioners, 21, 314–321. doi:10.1111/j.1745-7599.2009.00417.x

Castaneda, R., Olson, L. M., & Radley, L. C. (2013). Occupational therapy’s role in community mental health. Retrieved from http://www.aota.org/About-Occupational-Therapy/Professionals/MH/Community-Mental-Health.aspx#sthash.7aYvMJBy.dpuf

Centers for Disease Control and Prevention, National Center for Health Statistics. (1991). The international classification of diseases, 9th revision, clinical modification (ICD-9-CM). Washington, DC: US Department of Health and Human Services, Health Care Financing Administration.

Champagne, T., & Koomar, J. (2012). Evaluating sensory processing in mental health occupational therapy practice. OT Practice, 17(5), CE-1–CE-8.

Chang, Y.-S., Owen, J. P., Desai, S. S., Hill, S. S., Arnett, A. B., Harris, J., . . . Mukherjee, P. (2014). Autism and sensory processing disorders: Shared white matter disruption in sensory pathways but divergent connectivity in social-emotional pathways. PLOS ONE9(7), 1–17. doi:10.1371/journal.pone.0103038

Cheu, R. (2013). Living well with chronic illness: Natural ways to maintain and restore mental and spiritual well-being. Alternative Medicine, 11, 60–62.

Cohen, M. S. (1999). Families coping with childhood chronic illness: A research review. Families, Systems, & Health, 17, 149–164. doi:10.1037/h0089879

Cohn, E., May-Benson, T. A., & Teasdale, A. (2011). The relationship between behaviors associated with sensory processing and parental sense of competence. OTJR: Occupation, Participation and Health, 31, 172–181. doi:10.3928/15394492-20110304-01

Collier, N. R., & Falls, L. A. (2010). Making sense out of sensory processing disorder. ASCA School Counselor. Retrieved from http://www.schoolcounselor.org/school-counselors-members/professional-development/learn-more/student-mental-health-resources

Cosbey, J., Johnston, S. S., & Dunn, M. L. (2010). Sensory processing disorders and social participation. American Journal of Occupational Therapy, 64(3), 462–473. doi:10.5014/ajot.2010.09076

Cosbey, J., Johnston, S. S., Dunn, M. L., & Bauman, M. (2012). Playground behaviors of children with and without sensory processing disorders. OTJR: Occupation, Participation and Health, 32(2), 39–47.

doi:10.3928/15394492-20110930-01

Davies, P. L., & Gavin, W. J. (2007). Validating the diagnosis of sensory processing disorders using EEG technology. American Journal of Occupational Therapy, 61(2), 176–189. doi:10.5014/ajot.61.2.176

Dunn, W. (1997). The impact of sensory processing abilities on the daily lives of young children and families: A conceptual model. Infants &Young Children, 9, 23–35.

Dunn, W. (2001). The sensations of everyday life: Empirical, theoretical, and pragmatic considerations. American Journal of Occupational Therapy, 55(6), 608–620. doi:10.5014/ajot.55.6.608

Dunn, W. (2014). Sensory Profile 2 [Clinical assessment]. Retrieved from http://www.pearsonclinical.com/psychology/products/100000822/sensory-profile-2.html#tab-details

Gavin, W. J., Dotseth, A., Roush, K. K., Smith, C. A., Spain, H. D., & Davies, P. L. (2011). Electroencephalography in children with and without sensory processing disorders during auditory perception. American Journal of Occupational Therapy, 65, 370–377. doi:10.5014/ajot.2011.002055

Ghanizadeh, A. (2011). Sensory processing problems in children with ADHD, a systematic review. Psychiatry Investigation, 8(2), 89–94. doi:10.4306/pi.2011.8.2.89

Gladding, S. T. (2015). Family therapy: History, theory, and practice (6th ed.). Upper Saddle River, NJ: Pearson.

Goldsmith, H. H., Van Hulle, C. A., Arneson, C. L., Schreiber, J. E., & Gernsbacher, M. A. (2006). A population-based twin study of parentally reported tactile and auditory defensiveness in young children. Journal of Abnormal Child Psychology, 34, 393–407. doi:10.1007/s10802-006-9024-0

Gourley, L., Wind, C., Henninger, E. M., & Chinitz, S. (2013). Sensory processing difficulties, behavioral problems, and parental stress in a clinical population of young children. Journal of Child and Family Studies, 22, 912–921. doi:10.1007/s10826-012-9650-9

Grossman, N. S., & Okun, B. F. (2009). Challenges in family forensic psychology: Families with special-needs children II. The Family Psychologist, 25(2), 19–20.

Hall, L., & Case-Smith, J. (2007). The effect of sound-based intervention on children with sensory processing disorders and visual-motor delays. American Journal of Occupational Therapy, 61, 209–215.

Interdisciplinary Council on Developmental and Learning Disorders. (2012). Diagnostic manual for infancy and early childhood: Mental health disorders, developmental disorders, regulatory-sensory processing disorders, language disorders, and learning challenges. Bethesda, MD: ICDL-DMIC Work Groups.

James, K., Miller, L. J., Schaaf, R., Nielsen, D. M., & Schoen, S. A. (2011). Phenotypes within sensory modulation dysfunction. Comprehensive Psychiatry, 52, 715–724. doi:10.1016/j.comppsych.2010.11.010

Katz, I. (2006). Students with sensory integration dysfunctions: Issues for school counselors. Journal of School Counseling, 4(22), 1–22. Retrieved from http://jsc.montana.edu/articles/v4n22.pdf

Kinnealey, M., & Fuiek, M. (1999). The relationship between sensory defensiveness, anxiety, depression and perception of pain in adults. Occupational Therapy International, 6, 195–206. doi:10.1002/oti.97

Kirkpatrick, J. (2012). Sports for children with sensory processing disorders: A guide for occupational therapy practitioners. OT Practice, 17(10), 8–13.

Kranowitz, C. S. (2005). The out-of-sync child: Recognizing and coping with sensory processing disorder. New York, NY: Penguin Group.

Landreth, G. L., Ray, D. C., & Bratton, S. C. (2009). Play therapy in elementary schools. Psychology in the Schools, 46, 281–289. doi:10.1002/pits.20374

Levingston, S. A. (2014). The debate over sensory processing disorder: Are some kids really ‘out of sync’? The Washington Post. Retrieved from http://www.washingtonpost.com/national/health-science/the-debate-over-sensory-processing-disorder-are-some-kids-really-out-of-sync/2014/05/12/fca2d338-d521-11e3-8a78-8fe50322a72c_story.html

Marshak, L. E., Dandeneau, C. J., Prezant, F. P., & L’Amoreaux, N. A. (2010). The school counselor’s guide to helping students with disabilities. San Francisco, CA: Jossey-Bass.

McIntosh, D. N., Miller, L. J., Shyu, V., & Hagerman, R. J. (1999). Sensory-modulation disruption, electrodermal responses, and functional behaviors. Developmental Medicine & Child Neurology, 41, 608–615.

Miller, L. J. (2006). Sensational kids: Hope and help for children with sensory processing disorder (SPD). New York, NY: Penguin Group.

Miller, L. J., Anzalone, M. E., Lane, S. J., Cermak, S. A., & Osten, E. T. (2007). Concept evolution in sensory integration: A proposed nosology for diagnosis. American Journal of Occupational Therapy, 61, 135–140.

doi:10.5014/ajot.61.2.135

Miller, L. J., Nielsen, D. M., & Schoen, S. A., (2012). Attention deficit hyperactivity disorder and sensory modulation disorder: A comparison of behavior and physiology. Research in Developmental Disabilities, 33, 804–818. doi:10.1016/j.ridd.2011.12.005

Miller, L. J., Nielsen, D. M., Schoen, S. A., & Brett-Green, B. A. (2009). Perspectives on sensory processing disorder: A call for translational research. Frontiers in Integrative Neuroscience, 3(22), 1–12. doi:10.3389/neuro.07.022.2009

Murphy, S. N. (2011). Don’t touch me. Counseling Today, 53(10), 40–44.

Ostovar, R. (2009). The ultimate guide to sensory processing disorder: Easy, everyday solutions to sensory challenges. Arlington, TX: Sensory World.

Owen, J. P., Marco, E. J., Desai, S., Fourie, E., Harris, J., Hill, S. S., . . . Mukherjee, P. (2013). Abnormal white matter microstructure in children with sensory processing disorders. NeuroImage: Clinical, 2, 844–853.

doi:10.1016/j.nicl.2013.06.009

Parham, L. D., & Mailloux, Z. (2015). Sensory integration. In J. Case-Smith & J. C. O’Brien (Eds.), Occupational therapy for children and adolescents (7th ed., pp. 258–303). St. Louis, MO: Mosby.

Pollak, J., Levy, S., & Breitholtz, T. (1999). Screening for medical and neurodevelopmental disorders for the professional counselor. Journal of Counseling & Development, 77, 350–358. doi:10.1002/j.1556-6676.1999.tb02459.x

Schaaf, R. C., Benevides, T., Blanche, E. I., Brett-Green, B. A., Burke, J. P., Cohn, E. S., & … Schoen, A. S. (2010). Parasympathetic functions in children with sensory processing disorder. Frontiers in Integrative Neuroscience, 4(4), 1–10. doi:10.3389/fnint.2010.00004

Schaaf, R. C., Miller, L. J., Seawell, D., & O’Keefe, S. (2003). Children with disturbances in sensory processing: A pilot study examining the role of the parasympathetic nervous system. American Journal of Occupational Therapy, 57, 442–449.

Schoen, S. A., Miller, L. J., Brett-Green, B. A., & Nielsen, D. M. (2009). Physiological and behavioral differences in sensory processing: A comparison of children with autism spectrum disorder and sensory modulation disorder. Frontiers in Integrative Neuroscience, 3(29), 1–11. doi:10.3389/neuro.07.029.2009

Sensory Processing Disorder Foundation. (2012). Final decision for DSM-V. Retrieved from http://spdfoundation.net/sensory-processing-blog/2012/12/05/final-decision-for-dsm-v/

Sensory Processing Disorder Foundation. (2014). SPD scientific work group. Retrieved from http://www.spdfoundation.net/collaborations.html

Tomchek, S. D., & Dunn, W. (2007). Sensory processing in children with and without autism: A comparative study using the Short Sensory Profile. American Journal of Occupational Therapy, 61, 190–200.

Trice-Black, S., Bailey, C. L., & Riechel, M. E. K. (2013). Play therapy in school counseling. Professional School Counseling, 16, 303–312.

U.S. Department of Education, Office for Civil Rights. (2013). Protecting students with disabilities: Frequently asked questions about Section 504 and the education of children with disabilities. Retrieved from http://www2.ed.gov/about/offices/list/ocr/504faq.html

Van Hulle, C. A., Schmidt, N. L., & Goldsmith, H. H. (2012). Is sensory over-responsivity distinguishable from childhood behavior problems? A phenotypic and genetic analysis. The Journal of Child Psychology and Psychiatry, 53, 64–72. doi:10.1111/j.1469-7610.2011.02432.x

Walbam, K. M. (2014). The relevance of sensory processing disorder to social work practice: An interdisciplinary approach. Child and Adolescent Social Work Journal, 31, 61–70. doi:10.1007/s10560-013-0308-2

Withrow, R. L. (2007). Sensory integration dysfunction: Implications for counselors working with children. Journal of School Counseling, 5(18), 1–24.

World Health Organization. (2013). International statistical classification of diseases and related health problems (10th rev., 2014 ed.). Geneva, Switzerland: Author.

Zero to Three, National Center for Infants, Toddlers, and Families. (2005). DC:0-3R: Diagnostic classification of mental health and developmental disorders of infancy and early childhood. Washington, DC: Zero To Three Press.

 

 

Appendix A

 

Sensory Processing Disorder Checklist

 

© Sensory Therapies And Research (STAR) Center, 2006

Retrieved from http://spdfoundation.net/library/checklist.html

 

Many of the symptoms listed in the following categories are common to that particular age group. Where more than a few symptoms are found in a child, we recommend you talk to your doctor or check the SPD Foundation’s Treatment Directory for a professional experienced with treating Sensory Processing Disorder.*

 

Infant/ Toddler Checklist: 
____ My infant/toddler has problems eating.
____ My infant/toddler refused to go to anyone but me.
____ My infant/toddler has trouble falling asleep or staying asleep
____ My infant/toddler is extremely irritable when I dress him/her; seems to be uncomfortable in clothes.

____ My infant/toddler rarely plays with toys, especially those requiring dexterity.
____ My infant/toddler has difficulty shifting focus from one object/activity to another.
____ My infant/toddler does not notice pain or is slow to respond when hurt.
____ My infant/toddler resists cuddling, arches back away from the person holding him.
____ My infant/toddler cannot calm self by sucking on a pacifier, looking at toys, or listening to my voice.
____ My infant/toddler has a “floppy” body, bumps into things and has poor balance.
____ My infant/toddler does little or no babbling, vocalizing.
____ My infant/toddler is easily startled.
____ My infant/toddler is extremely active and is constantly moving body/limbs or runs endlessly.

____ My infant/toddler seems to be delayed in crawling, standing, walking or running.

 

Pre-School Checklist:
____ My child has difficulty being toilet trained.
____ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.
____ My child is unaware of being touched/bumped unless done with extreme force/intensity.
____ My child has difficulty learning and/or avoids performing fine motor tasks such as using crayons and

fasteners on clothing.
____ My child seems unsure how to move his/her body in space, is clumsy and awkward.
____ My child has difficulty learning new motor tasks.
____ My child is in constant motion.
____ My child gets in everyone else’s space and/or touches everything around him.
____ My child has difficulty making friends (overly aggressive or passive/ withdrawn).
____ My child is intense, demanding or hard to calm and has difficulty with transitions.
____ My child has sudden mood changes and temper tantrums that are unexpected.
____ My child seems weak, slumps when sitting/standing; prefers sedentary activities.
____ It is hard to understand my child’s speech.
____ My child does not seem to understand verbal instructions.

 

School Age: 
___ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.
___ My child is easily distracted in the classroom, often out of his/her seat, fidgety.
___ My child is easily overwhelmed at the playground, during recess and in class.
___ My child is slow to perform tasks.
___ My child has difficulty performing or avoids fine motor tasks such as handwriting.
___ My child appears clumsy and stumbles often, slouches in chair.
___ My child craves rough housing, tackling/wrestling games.
___ My child is slow to learn new activities.
___ My child is in constant motion.
___ My child has difficulty learning new motor tasks and prefers sedentary activities.
___ My child has difficulty making friends (overly aggressive or passive/ withdrawn).
___ My child gets stuck on tasks and has difficulty changing to another task.
___ My child confuses similar sounding words, misinterprets questions or requests.
___ My child has difficulty reading, especially aloud.
___ My child stumbles over words; speech lacks fluency, and rhythm is hesitant.

 

Adolescent/Adult: 
___ I am over-sensitive to environmental stimulation: I do not like being touched.
___ I avoid visually stimulating environments and/or I am sensitive to sounds.
___ I often feel lethargic and slow in starting my day.
___ I often begin new tasks simultaneously and leave many of them uncompleted.
___ I use an inappropriate amount of force when handling objects.
___ I often bump into things or develop bruises that I cannot recall.
___ I have difficulty learning new motor tasks, or sequencing steps of a task.
___ I need physical activities to help me maintain my focus throughout the day.
___ I have difficulty staying focused at work and in meetings.
___ I misinterpret questions and requests, requiring more clarification than usual.
___ I have difficulty reading, especially aloud.
___ My speech lacks fluency, I stumble over words.
___ I must read material several times to absorb the content.
___ I have trouble forming thoughts and ideas in oral presentations.

 

*While this checklist can’t diagnose a child with SPD, it can be a helpful guide to see if additional testing should be done. When filling out this checklist, think about the child’s behavior during the past six months.

 

 

Appendix B

 

Abbreviated List of Sensory Processing Disorder Resources

 

Resources for Parents, Teachers and Counselors

  • Answers to Questions Teachers Ask about Sensory Integration: Forms, Checklists, and Practical Tools for Teachers and Parents by Jane Koomar, Carol Kranowitz, Stacey Szklut, Lynn Balzer-Martin, Elizabeth Haber, Deanna Iris Sava
  • Building Sensory Friendly Classrooms to Support Children with Challenging Behaviors: Implementing Data Driven Strategies! by Rebecca A. Moyes
  • The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz
  • The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition by Carol Kranowitz and Lucy Jane Miller
  • Parenting a Child with Sensory Processing Disorder: A Family Guide to Understanding and Supporting Your Sensory-Sensitive Child by Christopher R. Auer
  • Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Integration Issues by Lindsey Biel and Nancy Peske
  • Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Jane Miller and Doris A. Fuller
  • Sensory Parenting, From Newborns to Toddlers: Everything is Easier When Your Child’s Senses are Happy! by Britt Collins and Jackie Linder Olson
  • Sensory Parenting, The Elementary Years: School Years Are Easier when Your Child’s Senses Are Happy! by Britt Collins and Jackie Linder Olson
  • Sensory Processing Disorder Foundation: http://www.spdfoundation.net/index.html
  • Starting Sensory Therapy: Fun Activities for the Home and Classroom! by Bonnie Arnwine
  • The Survival Guide for Travelling with a Sensory Kiddo: From Amusement Parks, to the Beach or a Weekend Road Trip to Visit Relatives…Sensory Help is Here! by Angie Voss
  • Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World by Sharon Heller
  • Understanding Your Child’s Sensory Signals: A Practical Daily Use Handbook for Parents and Teachers by Angie Voss
  • Your Essential Guide to Understanding Sensory Processing Disorder: When You See a Child Through Sensory Goggles…It ALL Makes More “Sense”! by Angie Voss

 

Sensory Processing Disorder Checklists

  • http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html
  • http://sinetwork.org/library/checklist.html
  • http://www.sensationalbrain.com/sensory-activities-6-quick-ideas/

 

For Children

  • The Adventures of Sensory Avoider Allie: Allie Only Eats Three Foods by Angie Voss and Dillon Seglem
  • Arnie and His School Tools: Simple Sensory Solutions That Build Success by Jennifer Veenendall
  • Ellie Bean the Drama Queen: A Children’s Book about Sensory Processing Disorder by Jennie Harding and Dave Padgett
  • I’m Not Weird, I Have Sensory Processing Disorder (SPD): Alexandra’s Journey (Growing with Love) by Chynna T. Laird
  • Meghan’s World: The Story of One Girl’s Triumph over Sensory Processing Disorder by Diane M. Renna and Regina Stark
  • Picky, Picky Pete by Michele Griffin
  • Sensitive Sam: Sam’s Sensory Adventure has a Happy Ending! by Marla Roth-Fisch
  • Squirmy Wormy: How I Learned to Help Myself by Lynda Farrington Wilson
  • This is Gabriel Making Sense of School: A Book About Sensory Processing Disorder by Hartley Steiner
  • Why Does Izzy Cover Her Ears? Dealing with Sensory Overload by Jennifer Veenendall

 

Emily Goodman-Scott, NCC, is an Assistant Professor at Old Dominion University. Simone F. Lambert, NCC, is the Counseling Department Chair and Associate Professor at Argosy University. Correspondence may be addressed to Emily Goodman-Scott, 110 Education Building, Old Dominion University, Norfolk, VA 23529, egscott@odu.edu.

 

Counseling Children With Cystic Fibrosis: Recommendations for Practice and Counselor Self-Care

Cassandra A. Storlie, Eric R. Baltrinic

Cystic fibrosis is a progressive, chronic disease that affects approximately 30,000 adults and children in the United States. Counseling children with the special needs specific to cystic fibrosis can be overwhelming for mental health professionals due to the progressive and deteriorating nature of the illness, long-term contact with clients, and discouraging prognosis. Being exposed to long-term therapeutic relationships with chronically ill children and witnessing treatment failure can contribute to burnout, compassion fatigue and vicarious trauma in counselors, highlighting the need for targeted literature addressing holistic self-care strategies. The purpose of this manuscript is to provide a review of the current literature illuminating the challenges facing children with cystic fibrosis and to provide targeted self-care suggestions for professional counselors working with this population.

 

Keywords: children, chronic disease, compassion fatigue, cystic fibrosis, self-care

 

 

Cystic fibrosis (CF) is a chronic, terminal disease targeting most organ systems (Withers, 2012) and affects approximately 30,000 children and adults nationwide (Cystic Fibrosis Foundation [CFF], 2014a). CF primarily affects the gastrointestinal and respiratory systems (Withers, 2012), and although the life expectancy has greatly improved, CF is fatal and there is no known cure (CFF, 2014a). Counseling children with chronic illnesses, such as CF, presents special challenges for mental health professionals (Sidell, 1997), including professional counselors. As the nature and severity of clients’ problems impact levels of counselor burnout or compassion fatigue (Figley, 2002), it is essential that professional counselors working with children with CF maintain healthy self-care practices.

 

There is an abundance of information examining the physiological aspects of CF that clients experience throughout the disease progression (CFF, 2014a; Pearson, Pumariega, & Seilheimer, 1991; Sawicki, Sellers, & Robinson, 2009; Sawicki & Tiddens, 2012). However, there is limited literature on the special considerations that need to be taken when counseling children with CF. Furthermore, there is a paucity of counseling literature targeting how professional counselors can foster personal self-care while working with young clients with special needs and chronic conditions. The purpose of this manuscript is to provide a review of literature that illuminates the challenges facing children with CF and provides a primer for self-care suggestions for professional counselors who work with these children.

 

Special Needs of Children with Cystic Fibrosis

 

Physiological Challenges Facing Children with Cystic Fibrosis

Professional counselors need to be knowledgeable of chronic diseases affecting their clients in order to be sensitive to the traumas experienced by children and families coping with illness (Thompson & Henderson, 2007). CF is most commonly diagnosed during newborn screening and severely affects the exocrine system (CFF, 2014b). Within the exocrine system, there is a lack of appropriate enzymes available during digestion, so children with CF are unable to properly digest their food and absorb essential nutrients for healthy growth and development. They experience recurrent gastrointestinal distress such as issues of diarrhea and constipation with foul-smelling stools due to poor absorption (CF Living, 2014). As such, children with CF often suffer from malnutrition and an inability to maintain a healthy weight. However, the most notable signs and symptoms affecting children with CF result from chronic lung and respiratory infections that lead to frequent coughing spells to clear the lungs of thick mucus. This inability to clear the lungs requires multiple episodes of daily chest physiotherapy (Berge & Patterson, 2004). Over time, the respiratory infections produce lung damage that appears cyst-like, giving name to the disease cystic fibrosis (CFF, 2014a).

 

Children with CF can spend hours per day on medical treatments such as nebulizer treatments to improve breathing, medications prior to meals to improve digestion, and oral, inhaled or intravenous antibiotics to treat respiratory infections (CF Living, 2014). However, disabilities from CF are not often visibly apparent until later stages of the disease. Decreased mobility and debilitating side effects from long-term medications, along with decreased lung capacity, all contribute to clients with CF requiring oxygen therapy for survival (Withers, 2012). The later stages of CF are inundated with frequent hospitalizations. Treatment during end-stage CF is palliative rather than curative (Lowton & Gabe, 2003), and without lung transplantation, CF remains a fatal disease due to respiratory failure (Hayes, Anstead, Warner, Kuhn, & Ballard, 2010). Nevertheless, medical breakthroughs have increased the survival rate of children with CF (Blum, 1992) and now many children are living into adulthood. Advanced clinical drug trials, aggressive antibiotic medications and innovative gene therapy research have been successful with CF clients of all ages. In 1955, children with CF were not expected to live to attend grade school. Children born with CF in this decade are projected to live into their 40s (CFF, 2014a). With this increase in life expectancy, health care teams are faced with unique challenges specific to the turbulence of adolescence and treatment compliance (Withers, 2012). Although there has been a predominant focus on treating CF based on medical science (Chesson, Chisholm, & Zaw, 2004), there is a strong interconnection of the psychosocial and physical challenges facing children and adolescents with CF. As such, professional counselors are called to increase their knowledge, skill and awareness of not just the physical challenges affecting children with CF, but also the emotional obstacles facing this population.

 

Psychosocial Challenges Facing Children with Cystic Fibrosis

Emotional and behavioral health disorders affect approximately 20% of all children and adolescents nationwide (Canning, Haner, Shade, & Boyce, 1992), and children with chronic illness may exhibit even higher incidences of mental health and psychosocial issues (Barnes, Eisenberg, & Resnick, 2010). For example, children with CF may experience extreme psychological challenges (e.g., depression, hopelessness, suicidal ideation) and physical complications (e.g., poor lung functioning, malnutrition) throughout the progression of their chronic condition. Taken together, these comorbidities contribute to the complexity of supporting an intense treatment modality (Anderson, Flume, & Hardy, 2001; Withers, 2012) that also promotes healthy psychosocial development and family system functioning (O’Haver et al., 2010).

In order to provide evidenced-based practices to clients with CF, as well as their families and loved ones, professional counselors need to be current on mental health research related to this special population. Studies have identified that children with CF may be predisposed to psychological issues and attachment and behavioral problems (Berge & Patterson, 2004) that may require additional training for professional counselors to effectively and efficiently counsel this population. When compared to healthy peers, children with chronic health conditions also have been found to have a slightly higher risk of attempting suicide (Barnes et al., 2010). Grief and loss, internal and external stress, negative body image, and difficulty managing emotions are common challenges experienced by children with CF (Berge & Patterson, 2004; Withers, 2012). In managing these difficulties, internalizing behaviors and anxiety also have been found prominent among this population (Berge & Patterson, 2004). Younger male children with CF have been found to exhibit higher levels of anxiety (Bregnballe, Thastum, & Schiøtz, 2007) and female children with CF have demonstrated internalizing behaviors by expressing less anger than female children without CF (Bregnballe et al., 2007).

 

Although research supports the idea that individuals with chronic illnesses are at increased risk for depression (Quittner et al., 2008), studies conducted on individuals with CF have provided mixed results (Pearson et al., 1991; Thompson, Hodges, & Hamlet, 1990). Berge and Patterson (2004) identified higher incidences of depression among youth with CF, whereas Tluczek et al. (2014) found that patients with CF report similar psychosocial functioning as their healthy peers. One possible factor affecting the mixed reports of depression among children with CF may include the level of disease acceptance. Previous investigations have identified that the level of disease acceptance among youth with CF can significantly lessen levels of anxiety, depression and disability in adolescents with CF (Casier et al., 2008). Nonetheless, depression and depressive symptoms have been shown to impact the progression of chronic diseases, such as CF, by increasing the likelihood that clients will be less compliant with treatment regimens and partake in risky behaviors (Quittner et al., 2008; Withers, 2012). Hence, we recommend assessing and screening for depressive symptoms frequently and examining the level of disease acceptance in clients with CF. Professional counselors working with children with CF will need to further tailor interventions based on the client’s symptom patterns (Chesson et al., 2004), while accounting for changes typical of childhood development.

 

Recently, scholars have researched the experiences of adolescents with CF in their transition to adulthood. This turbulent time (Withers, 2012) may need special consideration by professional counselors. Qualitative research on the experiences of adolescents with CF who were transitioning to adulthood generated the following three emerging themes: treatment compliance, health-related problems and future outlook concerning their disease (Berge, Patterson, Goetz, & Milla, 2007). Male participants described being more independent with treatment compliance, whereas females desired an accountability partner for their treatment regimen. Female participants expressed issues with depression, negative body image and fear of diabetes as a complication from CF, whereas males only disclosed their fear of acquiring diabetes as the disease progressed. Interestingly, both male and female participants expressed a positive outlook concerning CF regarding identity and acceptance of the disease (Berge et al., 2007). Identifying and maintaining a positive outlook while dealing with a chronic and debilitating illness can be a challenge for children with CF and their parents and families. Professional counselors working with youth with CF need to consider these findings. Special attention may be given to issues of treatment compliance, further physical complications from CF and maintaining a positive outlook.

 

Regarding risky behaviors (Quittner et al., 2008), teenagers with CF have admitted to using alcohol and drugs to seek relief from the challenges of CF (Vaeth & Martins, 2015). As such, professional counselors working with children with CF need to tailor interventions to the individuals’ symptom-specific patterns (Chesson et al., 2004) and be mindful of behaviors that may hasten the disease process. The use of alcohol and drugs may hasten the disease’s progression because of the ways in which these substances can interact with the client’s current prescription medication regimen. Alcohol use may result in pancreatitis and a hypoglycemic reaction (Withers, 2012). Likewise, clients who smoke legal and illegal substances contribute to the deterioration of lung functioning. We recommend frequently assessing and screening for substance abuse and depressive symptoms and exploring the level of disease acceptance among youth with CF in creative, developmentally appropriate ways. Importantly, professional counselors preparing counseling interventions for children with CF need to account for the added psychosocial and developmental challenges that are typical in childhood development.

 

Special Considerations When Counseling Children with Cystic Fibrosis

 

     Many children share similar psychological and developmental needs as they grow (Thompson & Henderson, 2007). However, children with chronic illness may struggle to be emotionally mature, while simultaneously managing the physical symptoms of their conditions (Dahlbeck & Lightsey, 2008). Furthermore, the psychosocial complexities and the chronic nature of CF may create unique challenges for professional counselors providing services to children and their families, such as the deteriorating nature of CF, frequent hospitalizations and the life-threatening prognosis (Frels, Leggett, & Larocca, 2009; Morison, Bromfield, & Cameron, 2003). Counseling professionals’ increased sensitivity to the progression and impact of this disease can help guide their intervening efforts (Chesson et al., 2004) by leading them to consider the physiological and psychological trauma caused by CF. Professional counselors must ensure that they have developed rapport with the child as an individual, instead of a child with a disability (Thompson & Henderson, 2007).

 

Counseling interventions for children with CF begin with recognizing that children with CF are not adults with CF. Therefore, treatment and counseling efforts need to allow for special consideration of childhood development and understanding (Chesson et al., 2004; Geldard & Geldard, 2008). Chesson et al. (2004) offered suggestions for meeting the needs of children with chronic illnesses through counseling. First, counselors need to obtain the child’s understanding of counseling (e.g., what it is, how it will help, roles, communication). Although parental support and involvement is important when counseling children (Geldard & Geldard, 2008; Morison et al., 2003), relying solely on parental reports is not a replacement for exploring the child’s perspective of counseling (Geldard & Geldard, 2008). Chronic illnesses such as CF impact the whole family system (Kirk et al., 2013). However, within the therapeutic counseling relationship, children with CF must feel as if they are the experts on their lives and their mental health, regardless of age.

 

Second, counselors working with children should limit the amount of talking they do in session (Chesson et al., 2004) in favor of engaging children through natural modes of expression such as play, drawing and games. We recommend structuring counseling sessions to include discussions alongside an activity, versus a sole reliance on face-to-face conversation, in order to improve rapport building within the therapeutic relationship. Children engaging in healthy interdependent relationships with counselors can begin to develop a sense of independence and trust (Juntunen & Atkinson, 2002) within the counseling process, despite the tumultuous times during the disease progression. The adverse impact of chronic illness on social functioning (Last, Stam, Onland-van Nieuwenhuizen, & Grootenhuis, 2007) can lead to social withdrawal (Dahlbeck & Lightsey, 2008), which can be intensified when there is a concentrated focus on the child via adult approaches to counseling (e.g., making the child the center of attention to discuss his or her illness). As such, we recommend that professional counselors make age-appropriate and developmental adjustments to the counseling session and consider instituting group counseling modalities to counter the regularity of social isolation among these children.

 

Third, professional counselors developing a therapeutic relationship with a child experiencing CF must incorporate interactions that address the traumatic impact of living with the illness. Children with CF undergo physically stressful and painful experiences during medical treatment. Geldard and Geldard (2008) suggested that professional counselors clarify the nature of counseling and differentiate it from medical treatments. They also suggested maintaining an environment that provides acceptance and invites free disclosure. Professional counselors are urged to explain the distinction between counseling and medical procedures (e.g., there are no needles or painful medical procedures in counseling). Professional counselors also are encouraged to engage children in activities and play to reduce their level of anxiety and guardedness (Chesson et al., 2004). These targeted counseling strategies can promote resiliency factors such as self-efficacy and empowerment so that children may cope with adversity throughout the illness (Dahlbeck & Lightsey, 2008; Luszczynska, Gutiérrez-Doña, & Schwarzer, 2005). Chesson et al. (2004) further suggested that counselors gradually establish the therapeutic relationship over a number of shorter sessions in order to establish trust with the child. We caution against rushing the counseling relationship-building process and encourage professional counselors to listen openly in order to understand the child’s world.

 

As children struggle with chronic illnesses such as CF, acute emotional reactions are invariably triggered, which may increase the propensity for children to act out in self-injurious ways (Vaeth & Martins, 2015). The counseling process requires consistency and transparency when discussing how a child’s treatment progress will be shared among adults. Accordingly, a fourth special consideration needs to be illuminated—the limits of confidentiality. Professional counselors must illustrate the circumstances when parents will be notified of instances of self-harm or suicidal and homicidal ideation. Given the susceptibility of children with chronic illnesses to depression (Quittner et al., 2008) and suicidal ideation (Barnes et al., 2010), coping with the challenges and effects of CF are constantly in the minds of these children. Rebecca Mueller (2001) illustrated this point as a young person struggling with the illness as follows:

 

All the information I have about my disease has been dispersed in small pieces over time. The idea that [when] a child with CF reaches a certain age, truth and honest answers should suddenly be given is awful. With the many different sides and aspects of CF or other diseases, the information needs to come out over time, giving the person time to react and contemplate. (p. 43)

 

Professional counselors working with children with CF understand the need for a collaborative approach in supporting individuals and families experiencing the trauma of chronic illness. Children with chronic diseases are involved with multiple treatment professionals (e.g., dieticians, respiratory therapists, physicians, nurses, case managers, mental health and school counselors). Chesson et al. (2004) recommended that counselors assist children with understanding the decisions made by their parents, doctors and other professionals about their treatment. This task can be done by assessing the child’s knowledge of the disease process and treatment and initiating family sessions or sessions with other health care professionals when warranted. Ultimately, children who protest treatment interventions can be overridden by a caregiver’s decision. When children have a history of adult-driven decisions related to life-preserving medical treatments, this experience can make behavioral counseling interventions difficult. We suggest that counselors make every effort to respect the feelings and wishes of children with CF, including helping to “coordinate services, rearranging physical environments, removing barriers and inconveniences, and securing special equipment and materials” (Thompson & Henderson, 2007, p. 713). Professional counselors can further facilitate this supportive process by empowering children to identify and articulate their perspectives on medical treatments, given their limited choices (Chesson et al., 2004; Morison et al., 2003).

 

Family Involvement

Family involvement is critical to all aspects of treatment of children with CF, starting with diagnosis. Parents and families are significantly affected when their child is diagnosed with a chronic illness (Anderson et al., 2001; O’Haver et al., 2010). Thompson and Henderson (2007) explained, “The demands for energy, time, and financial resources may add a heavy burden of stress to families” (p. 602). It is essential to note that families and children face myriad stressors related to the “uncertainty and uncontrollability” of chronic illness, along with “restrictions on their freedom” (Last et al., 2007, p. 102). However, family members (particularly parents) are often responsible for providing an environment in which children can develop resiliency and independence. Family members provide a supportive environment and help to promote children’s sense of self-worth and ability to cope with challenging life situations (Juntunen & Atkinson, 2002). These tasks may be especially difficult for parents of children with CF in that they too are more vulnerable to higher incidences of depression (Quittner et al., 2008; Tluczek et al., 2014). Hence, we recommend that professional counselors working with the family system ensure that parents of children with CF have access to the emotional supports necessary to sustain family functioning and equilibrium, including participation in their own counseling as needed (Tluczek et al., 2014). Similarly, professional counselors may find it necessary to provide parent education about the CF disease process in order to help parents identify strategies to enhance resiliency in their child (Juntunen & Atkinson, 2002).

 

Counseling children with CF involves implementing prolonged and gradual approaches to relationship building, increasing one’s knowledge of the illness, adapting treatment approaches to account for the impact of invasive medical procedures, and involving parents, guardians and other professionals in the counseling process. Above all, honoring the perspective of the child is central to success in counseling this population, which can be easier said than done. The chronic and complex nature of CF and its treatment requires a great deal of effort and presents additional clinical challenges for professional counselors. Over time, the challenges of working with children with special needs can affect the wellness of professional counselors providing services. Therefore, it is important for counselors to recognize the factors contributing to impairment and burnout, particularly among counselors who work with children experiencing chronic illnesses like CF.

 

A Self-Care Primer for Professional Counselors

 

Professional counselors and other health professionals engaged in prolonged therapeutic contact with clients with CF are vulnerable to burnout, compassion fatigue and vicarious trauma (Coady, Kent, & Davis, 1990; Lewiston, Conley, & Blessing-Moore, 1981; Savicki & Cooley, 1987), potentially leading to impairment. Counselors have an ethical obligation to recognize their state of wellness and potential impairment (American Counseling Association [ACA], 2011), which may be impacted by burnout, compassion fatigue or vicarious trauma while working with children experiencing chronic conditions (Angerer, 2003; Kalliath, O’Driscoll, Gillespie, & Bluedorn, 2000; Najjar, Davis, Beck-Coon, & Doebbeling, 2009; Sexton, 1999) such as CF. Such occupational risks may be heightened when professionals work with clients with a poor prognosis associated with chronic illness, including CF (Coady et al., 1990).

 

Counselors and other mental health professionals experience occupational stressors such as long working hours, work with challenging clients, poor interdisciplinary support and poor supervision (Coady et al., 1990). Lewiston et al. (1981) examined burnout among health care providers working with clients experiencing CF. They found high levels of emotional exhaustion and client depersonalization (i.e., a sense of inability to impact clients’ improvement while watching clients’ illness progress), and a lower sense of accomplishment among health care providers working with this population. The implications of these results are intensified because “psychotherapists who work with chronic illnesses tend to disregard their own self-care needs when focusing on the needs of clients” (Figley, 2002, p. 1433).

 

Children with CF and their families are survivors of both medical and psychosocial traumas. Frequent trips to the emergency room, an inability to breathe, surgeries, and understanding the unpredictable and fatal progression of CF are among the traumas endured by this special population. Professional counselors who hear these traumatic stories within the therapeutic milieu must understand that vicarious trauma can occur for even the most experienced counselor. Sommer (2008) clarified that vicarious traumatization is not inadequacy on behalf of the counselor or emotional damage of the client but can be considered an “occupational hazard” (p. 52). Vicarious trauma, defined as “a traumatic reaction to specific client-presented information” (Trippany, Kress, & Wilcoxon, 2004, p. 32), also may occur among professional counselors working with children who have CF due to the erratic and terminal progression of the illness.

 

Professional counselors serving the CF community must recognize their vulnerabilities to burnout, compassion fatigue and vicarious trauma. Given the realities of clinical practice and responsibilities of everyday living (e.g., busy schedules, high caseloads, supervision barriers, family responsibilities, maintaining relationships), poor self-care and wellness may be easy to identify but difficult to change. In order to prevent issues of burnout, compassion fatigue and vicarious trauma, the following self-care strategies are suggested for professional counselors who work with this special population.

 

Self-Care Strategies for Professional Counselors

Although counselors are taught to utilize a developmental and wellness approach when working with clients (Myers & Sweeney, 2005), they often neglect their own health and well-being. Self-care strategies embedded in a wellness philosophy may help to prevent incidences of burnout among those working with the unique emotional and psychosocial stressors affecting children with CF and their families. Myers and Sweeney (2005) identified wellness as both a process and an outcome in that it is an “overarching goal for living and a day-by-day, minute-by-minute way of being” (p. 9). Self-care strategies involve managing stress in ways that limit the impact on the individual (Young, 2005). Within the counseling literature, wellness is depicted as incorporating social, emotional, physical, intellectual and spiritual dimensions (Roscoe, 2009). Counseling wellness models have been empirically supported in the counseling literature (Myers & Sweeney, 2005; Myers, Sweeney, & Witmer, 2000; Sweeney & Witmer, 1991; Witmer & Sweeney, 1992) and inform individuals about methods to limit their stress and maintain a healthy sense of well-being. Hence, we recommend that professional counselors use multidimensional, holistic self-care strategies to maintain a sense of wellness when working with youth experiencing special needs. The following section provides physiological, cognitive and spiritual wellness strategies for professional counselors to use while working with children with CF and other chronic conditions.

 

Physiological self-care strategies. Professional counselors are accustomed to working with clients regarding wellness and self-care but may not always practice their own healthy suggestions. Self-care strategies that are body-focused may help alleviate the impact of stress (Young, 2005), particularly among those working with children with special needs such as CF. Young (2005) recommended approaches such as progressive relaxation, balanced exercise and nutrition, and adequate rest to assist with integrating a wellness focus and enhancing self-care. A healthy diet and physical activity are readily known to prevent physical and mental health conditions, while also increasing energy levels. Furthermore, “minding the body” and having adequate sleep and bodily rest are additional suggestions for restoring self-care as a priority for professional counselors (Norcross & Guy, 2007, pp. 64–65). Professional counselors interested in implementing physiological self-care strategies to address potential issues of vicarious trauma while working with children diagnosed with CF may consider simple tasks such as taking a brisk walk during their lunch break, joining a gym, or being more intentional with their diet and bedtime routines. In addition to focusing on physical health and wellness, self-care in the cognitive domain is equally important for fostering a sense of well-being.

 

Cognitive self-care strategies. Stress from occupational risks accumulated through working with youth with special needs may be further prevented if counselors utilize cognitive approaches to support their own self-care. Professional counselors interested in improving their self-care in cognitive ways may consider cognitive restructuring to formulate new thinking patterns and assertiveness training to bring about direct changes in behaviors that may have been impacted by stress (Young, 2005), which often accumulates during the long-term therapeutic relationship with children and families affected by CF. Moreover, the use of guided imagery may provide both cognitive and physical benefits in helping to create a cognitive break from daily stress inside and outside the workplace. Notably, cognitive self-care strategies begin with self-monitoring, insight and self-awareness (Norcross & Guy, 2007). Despite counselors’ close therapeutic connection to clients with CF and their families, healthy boundaries are imperative to prevent issues of burnout and compassion fatigue. Norcross and Guy (2007) noted that “setting boundaries consistently emerges in the research as one of the most frequently used and one of the most highly effective self-care principles” (p. 94). Due to counselors’ innate desire to help others, they often take on too many clients or are mandated to do so by agency policies. Counselors may provide extra time to ancillary responsibilities and have unrealistic expectations of themselves. As such, we recommend that professional counselors obtain good supervision to help manage and maintain work–life balance, particularly when working with children with special needs. In addition to the benefits of physical and cognitive self-care strategies, spirituality also has been shown to enhance levels of wellness and thus decrease the potential for burnout and compassion fatigue.

 

Spiritual self-care strategies. Spirituality comes in many forms and there is no finite definition of how one engages in his or her spiritual self. Many counselors and psychotherapists identify their own career path as a calling to care for others and commitment to growth and self- knowledge (Norcross & Guy, 2007). Research supports that spirituality, prayer and meditation are positive manners in which to promote wellness and augment self-care (Cashwell, 2005). Spiritual beliefs, practices and experiences are intricately connected and may continue to foster support from communities and individuals, along with reinforcing healthy emotions. While working with children experiencing the later stages of CF, professional counselors’ spirituality may help them connect with clients on a more meaningful level. Taking a spiritual perspective can further shape counselors’ perspective on life events (Young, 2005), particularly when they are grieving the death of a child with CF. In seeking a spiritual connection to a higher power, the negative responses to stressful events may be limited (Young, Cashwell, & Shcherbakova, 2000), strengthening one’s wellness and ability to care for oneself. These actions, along with discussing spirituality with the child and family affected by CF, may further model healthy practices during difficult times in the disease process.

 

Spiritual self-care can include the use of mindfulness, which can be viewed as the nonjudgmental awareness of one’s own inner suffering (Birnie, Speca, & Carlson, 2010) and reflections on self-compassion (Neff, 2003). Birnie et al. (2010) described self-compassion as the awareness of “feelings of caring and kindness towards oneself in the face of personal suffering” and the “recognition that one’s suffering, failures, and inadequacies are part of the human condition” (p. 2). When counseling children with CF, professional counselors may consider routinely expressing self-compassion as part of their inner dialogue. The following mantra used by the second author may be of assistance to professional counselors implementing spiritual self-care:

 

Suffering is part of life. My clients suffer, but did not choose this illness. They are walking in its wake and I will walk alongside them. I will extend loving kindness in all the work I do, despite the pain and suffering I experience and witness.

 

We highlight the following three essential components of self-compassion: (a) extending kindness and understanding toward oneself rather than harsh judgments or criticism, (b) recognizing that suffering (even chronic illness) is a part of the larger human condition, and (c) not overidentifying with the awareness of one’s painful thoughts (Birnie et al., 2010; Neff, 2003). By engaging in self-compassion and mindfulness, professional counselors may help to prevent incidences of compassion fatigue while working with children and families affected by CF by recognizing that this illness has a role in their humanity.

 

Conclusion

 

     Professional counselors working with children and families affected by CF should consider the physical and psychosocial challenges facing this special-needs population. With the discouraging nature of the disease progression, professional counselors must have a basic understanding of the client’s chronic condition (Thompson & Henderson, 2007) and how the progression of the illness affects the child’s emotional state. Professional counselors must further explore how to limit the impact of occupational stress that may lead to burnout, compassion fatigue and vicarious trauma. This article provides a primer on the physiological, psychosocial and special needs specific to youth with CF and offers targeted self-care strategies for professional counselors. Children with CF are a special population and professional counselors are called to implement these special considerations in their thoughtful practice. There is an abundance of literature examining the physiological aspects of CF (CFF, 2014a; Pearson et al., 1991; Sawicki et al., 2009; Sawicki & Tiddens, 2012). However, more research is warranted to examine the salient factors that affect the therapeutic relationship between professional counselors and children with CF. Meanwhile, professional counselors can develop and implement individualized, multidimensional self-care strategies to counter the effects of this difficult yet rewarding work.

 

Conflict of Interest and Funding Disclosure

The authors reported no conflict of

interest or funding contributions for

the development of this manuscript.

 

References

American Counseling Association. (2011). ACA’s taskforce on counselor wellness and impairment. Retrieved from http://www.counseling.org/knowledge-center/counselor-wellness

Anderson, D. L., Flume, P. A., & Hardy, K. K. (2001). Psychological functioning of adults with cystic fibrosis. Chest, 119, 1079–1084.

Angerer, J. M. (2003). Job burnout. Journal of Employment Counseling, 40, 98–107.

doi:10.1002/j.2161-1920.2003.tb00860.x

Barnes, A. J., Eisenberg, M. E., & Resnick, M. D. (2010). Suicide and self-injury among children and youth with chronic health conditions. Pediatrics, 125, 889–895. doi:10.1542/peds.2009-1814

Berge, J. M., & Patterson, J. M. (2004). Cystic fibrosis and the family: A review and critique of the literature. Families, Systems and Health, 22, 74–100. doi:10.1037/1091-7527.221.74

Berge, J. M., Patterson, J. M., Goetz, D., & Milla, C. (2007). Gender differences in young adults’ perceptions of living with cystic fibrosis during the transition to adulthood: A qualitative investigation. Families, Systems, and Health, 25, 190–203. doi:10.1037/1091-7527.25.2.190

Birnie, K., Speca, M., & Carlson, L. E. (2010). Exploring self-compassion and empathy in the context of mindfulness-based stress reduction (MBSR). Stress and Health, 26, 359–371. doi:10.1002/smi.1305

Blum, R. W. (1992). Chronic illness and disability in adolescence. Journal of Adolescent Health, 13, 364–368. doi:10.1016/1054-139X(92)90029-B

Bregnballe, V., Thastum, M., & Schiøtz, P. O. (2007). Psychosocial problems in children with cystic fibrosis. Acta Pædiatrica, 96, 58–61. doi:10.1111/j.1651-2227.2006.00014.x

Canning, E. H., Haner, S. B., Shade, K. A., & Boyce, W. T. (1992). Mental disorders in chronically ill children: Parent-child discrepancy and physician identification. Pediatrics, 90, 692–696.

Cashwell, C. S. (2005). Spirituality and wellness. In J. E. Myers & T. J. Sweeney (Eds.), Counseling for wellness: Theory, research, and practice (pp. 197–205). Alexandria, VA: American Counseling Association.

Casier, A., Goubert, L., Huse, D., Theunis, M., Franckx, H., Robberecht, E., . . . Crombez, G. (2008). The role of acceptance in psychological functioning in adolescents with cystic fibrosis: A preliminary study. Psychology and Health, 23, 629–638. doi:10.1080/08870440802040269

CF Living. (2014). About CF. Retrieved from http://www.cfliving.com/newly-diagnosed/living-with-cf/about-cf.jsp

Chesson, R. A., Chisholm, D., & Zaw, W. (2004). Counseling children with chronic physical illness. Patient Education and Counseling, 55, 331–338. doi:10.1016/j.pec.2003.04.002

Coady, C. A., Kent, V. D., & Davis, P. W. (1990). Burnout among social workers working with patients with cystic fibrosis. Health and Social Work, 15, 116–124.

Cystic Fibrosis Foundation. (2014a). About cystic fibrosis. Retrieved from http://www.cff.org/AboutCF/

Cystic Fibrosis Foundation. (2014b). Newborn screening: Info for new parents. Retrieved from http://www.cff.org/AboutCF/Testing/NewbornScreening/

Dahlbeck, D. T., & Lightsey, O. R., Jr. (2008). Generalized self-efficacy, coping, and self-esteem as predictors of psychological adjustment among children with disabilities or chronic illnesses. Children’s Health Care, 37, 293–315. doi:10.1080/02739610802437509

Figley, C. R. (2002). Compassion fatigue: Psychotherapists’ chronic lack of self care. Journal of Clinical Psychology, 58, 1433–1441. doi:10.1002/jclp.10090

Frels, R. K., Leggett, E. S., & Larocca, P. S. (2009). Creativity and solution-focused counseling for a child with chronic illness. Journal of Creativity in Mental Health, 4, 308–319. doi:10.1080/15401380903372646

Geldard, K., & Geldard, D. (2008). Counselling children: A practical introduction (3rd ed.). London, England: Sage.

Hayes, D., Jr., Anstead, M. I., Warner, R. T., Kuhn, R. J., & Ballard, H. O. (2010). Inhaled morphine for palliation of dyspnea in end-stage cystic fibrosis. American Journal of Health-System Pharmacy, 67, 737–740.

doi:10.2146/ajhp080188

Juntunen, C. L., & Atkinson, D. R. (Eds.). (2002). Counseling across the lifespan: Prevention and treatment. Thousand Oaks, CA: Sage.

Kalliath, T. J., O’Driscoll, M. P., Gillespie, D. F., & Bluedorn, A. C. (2000). A test of the Maslach burnout inventory in three samples of healthcare professionals. Work and Stress, 14, 35–50. doi:10.1080/026783700417212

Kirk, S., Beatty, S., Callery, P., Gellatly, J., Milnes, L., & Pryjmachuk, S. (2013). The effectiveness of self-care support interventions for children and young people with long-term conditions: A systematic review. Child: Care, Health and Development, 39, 305–324. doi:10.1111/j.1365-2214.2012.01395.x

Last, B. F., Stam, H., Onland-van Nieuwenhuizen, A.-M., & Grootenhuis, M. A. (2007). Positive effects of a psycho-educational group intervention for children with a chronic disease: First results. Patient Education and Counseling, 65, 101–112. doi:10.1016/j.pec.2006.06.017

Lewiston, N. J., Conley, J., & Blessing-Moore, J. (1981). Measurement of hypothetical burnout in cystic fibrosis caregivers. Acta Pædiatrica, 70, 935–939. doi:10.1111/j.1651-2227.1981.tb06254.x

Lowton, K., & Gabe, J. (2003). Life on a slippery slope: Perceptions of health in adults with cystic fibrosis. Sociology of Health and Illness, 25, 289–319. doi:10.1111/1467-9566.00348

Luszczynska, A., Gutiérrez-Doña, B., & Schwarzer, R. (2005). General self-efficacy in various domains of human functioning: Evidence from five countries. International Journal of Psychology, 40, 80–89. doi:10.1080/00207590444000041

Morison, J. E., Bromfield, L. M., & Cameron, H. J. (2003). A therapeutic model for supporting families of children with a chronic illness or disability. Child and Adolescent Mental Health, 8, 125–130. doi:10.1111/1475-3588.00058

Mueller, R. (2001). The child’s perspective. In M. Bluebond-Langner, B. Lask, & D. B. Angst (Eds.), Psychological aspects of cystic fibrosis (pp. 37–44). New York, NY: Arnold.

Myers, J. E., & Sweeney, T. J. (Eds.). (2005). Counseling for wellness: Theory, research, and practice. Alexandria, VA: American Counseling Association.

Myers, J. E., Sweeney, T. J., & Witmer, J. M. (2000). The wheel of wellness counseling for wellness: A holistic model for treatment planning. Journal of Counseling & Development, 78, 251–266. doi:10.1002/j.1556-6676.2000.tb01906.x

Najjar, N., Davis, L. W., Beck-Coon, K., & Doebbeling, C. C. (2009). Compassion fatigue: A review of the research to date and relevance to cancer-care providers. Journal of Health Psychology, 14, 267–277. doi:10.1177/1359105308100211

Neff, K. (2003). Self-compassion: An alternative conceptualization of a healthy attitude toward oneself. Self and Identity, 2, 85–102. doi:10.1080/15298860309032

Norcross, J. C., & Guy, J. D., Jr. (2007). Leaving it at the office: A guide to psychotherapist self-care. New York, NY: Guilford Press.

O’Haver, J., Moore, I. M., Insel, K. C., Reed, P. G., Melnyk, B. M., & Lavoie, M. (2010). Parental perceptions of risk and protective factors associated with the adaptation of siblings of children with cystic fibrosis. Pediatric Nursing, 36, 284-–292.

Pearson, D. A., Pumariega, A. J., & Seilheimer, D. K. (1991). The development of psychiatric symptomatology in patients with cystic fibrosis. Journal of the American Academy of Child & Adolescent Psychiatry, 30, 290–297.

Quittner, A. L., Barker, D. H., Snell, C., Grimley, M. E., Marciel, K., & Cruz I. (2008). Prevalence and impact of depression in cystic fibrosis. Current Opinion in Pulmonary Medicine, 14, 582–588. doi:10.1097/MCP.0b013e3283121cf1

Roscoe, L. J. (2009). Wellness: A review of theory and measurement for counselors. Journal of Counseling & Development, 87, 216–226. doi:10.1002/j.1556-6678.2009.tb00570.x

Savicki, V., & Cooley, E. (1987). The relationship of work environment and client contact to burnout in mental health professionals. Journal of Counseling & Development, 65, 249–252.

Sawicki, G. S., Sellers, D. E., & Robinson, W. M. (2009). High treatment burden in adults with cystic fibrosis: Challenges to disease self-management. Journal of Cystic Fibrosis, 8, 91–96. doi:10.1016/j.jcf.2008.09.007

Sawicki, G. S., & Tiddens, H. (2012). Managing treatment complexity in cystic fibrosis: Challenges and opportunities. Pediatric Pulmonology, 47, 523–533. doi:10.1002/ppul.22546

Sexton, L. (1999). Vicarious traumatisation of counsellors and effects on their workplaces. British Journal of Guidance and Counselling, 27, 393–403. doi:10.1080/03069889908256279

Sidell, N. L. (1997). Adult adjustment to chronic illness: A review of the literature. Health & Social Work, 22, 5–11. doi:10.1093/hsw/22.1.5

Sommer, C. A. (2008). Vicarious traumatization, trauma-sensitive supervision, and counselor preparation. Counselor Education and Supervision, 48, 61–71. doi:10.1002/j.1556-6978.2008.tb00062.x

Sweeney, T. J., & Witmer, J. M. (1991). Beyond social interest: Striving toward optimum health and wellness. Individual Psychology: The Journal of Adlerian Theory, Research & Practice, 47, 527–540.

Thompson, C. L., & Henderson, D. A. (2007). Counseling children (7th ed.). Belmont, CA: Thomson.

Thompson, R. J., Jr., Hodges, K., & Hamlett, K. W. (1990). A matched comparison of adjustment in children with cystic fibrosis and psychiatrically referred and nonreferred children. Journal of Pediatric Psychology, 15, 745–759. doi:10.1093/jpepsy/15.6.745

Tluczek, A., Laxova, A., Grieve, A., Heun, A., Brown, R. L., Rock, M. J., . . . Farrell, P. M. (2014). Long-term follow-up of cystic fibrosis newborn screening: Psychosocial functioning of adolescents and young adults. Journal of Cystic Fibrosis, 13, 227–234. doi:10.1016/j.jcf.2013.10.001

Trippany, R. L., Kress, V. E. W., & Wilcoxon, S. A. (2004). Preventing vicarious trauma: What counselors should know when working with trauma survivors. Journal of Counseling & Development, 82, 31–37. doi:10.1002/j.1556-6678.2004.tb00283.x

Vaeth, S., & Martins, L. (2015). Teens, cystic fibrosis and emotional health. Retrieved from http://cfcenter.stanford.edu/teens/CysticFibrosisandEmotionalHealth_000.html

Withers, A. L. (2012). Management issues for adolescents with cystic fibrosis. Pulmonary Medicine, 2012, 1–10. doi:10.1155/2012/134132

Witmer, J. M., & Sweeney, T. J. (1992). A holistic model for wellness and prevention over the life span. Journal of Counseling & Development, 71, 140–148.

Young, J. S. (2005). A wellness perspective on the management of stress. In J. E. Myers & T. J. Sweeney (Eds.), Counseling for wellness: Theory, research, and practice (pp. 207-–215). Alexandria, VA: American Counseling Association.

Young, J. S., Cashwell, C. S., & Shcherbakova J. (2000). The moderating relationship of spirituality on negative life events and psychological adjustment. Counseling and Values, 45, 49–57.

 

Cassandra A. Storlie, NCC, is an Assistant Professor at Kent State University. Eric R. Baltrinic is an Assistant Professor at the University of Toledo. Correspondence may be addressed to Cassandra Storlie, 310 White Hall, PO Box 5190, Kent, OH 44242, cstorlie@kent.edu.

 

Because “Mama” Said So: A Counselor–Parent Commentary on Counseling Children With Disabilities

Sherry Richmond-Frank

This article, written by a parent of an adult child with spina bifida, invites counselors into the life experiences of children with handicaps and their families. The description of these experiences highlights current problems with the stigma this population experiences. The author describes the varying disability identities and orientations that have evolved within the disability culture and wider society. Counselors are encouraged to use unbiased terminology in both research and clinical work with children with disabilities. Solutions are offered for counselors to implement in practice and research to further overcome stereotypes, develop disability awareness and provide helpful counseling. The author provides practical interventions for a variety of challenges where counselors may be useful to children with disabilities and their families.

Keywords: children, disabilities, stereotypes, stigma, handicaps

 

I am a counselor, a life coach and the parent of an individual with a disability. Since entering the disability community 28 years ago with the birth of my daughter, I have attended both workshops and seminars designed to assist parents concerning children with disabilities or chronic illness. In 2005, I attended eight monthly sessions of Partners in Policymaking, a national leadership training program for people with developmental disorders and family members of young children with disabilities, designed to achieve productive partnerships between people needing and using services and those who make public policy and laws. In this article, I provide information about children with disabilities and their family systems and offer recommendations for counselors working with children with disabilities and their families.

 

Disability Identity and Orientation

 

I use the term disability in this article, while the preferable word to describe differences is variation, a more neutral term that lacks negative connotations for children in society. Variations provide richness and diversity in life that can be noted without being denigrated or overemphasized. Depending on how children or adults identify with and orient themselves to the impact of their disabilities, both personally and with respect to society at large, they may have varying preferences for acceptable terms. The reader can consult Gilson and DePoy (2004) for a discussion on disability identities and orientations.

 

The saying “Nothing about us without us” is an informal one within the disability community. Hahn (1993), a social scientist with over 10 years of research experience in the disability field and personal experience using crutches and a wheelchair since the age of 6, has spoken of a minority model of disability that has its origins in a sociopolitical model. This model arose when individuals with non-transient or lifelong disabilities stated that research using prior models did not seem relevant to their lived experience. Thus, policies and services that arose from these models did not result in meaningful life improvements. Attitudinal variation has arisen within the disability subculture regarding identities and orientations toward disabilities. A sociological ideology for conceptualizing individuals with disabilities and their families has emerged, which varies from the older entrenched medical model that regards disability as illness, tragedy or a negative situation requiring treatment and rehabilitation. Using the medical model, people with disabilities and their families are conceptualized based on their acceptance of and adaptation to disabilities. The sociological model focuses on the larger society or system and its reaction to the individual, rather than examining the person with the disability as the identified patient. Impairment and dysfunction are conceptualized as part of the larger system, with its handicapping environment and public attitudinal barriers, rather than within the individual who has varying abilities and is referred to by this larger system as a person with a disability.

 

A wide range of models have evolved to the point that Darling (2003) proposed an exploration of disability orientations that include normalization, crusadership, affirmation, isolated affirmation, situational identification, resignation and apathy. Familiarity with these orientations will help counselors understand the disability identities and orientations of their clients and their family members. It is beneficial to acquire a clearer understanding of disabilities and their actual rather than imagined impact on clients in order to improve one’s diversity awareness.

 

Eliminating Ableism and Pity

Professionals entering the multilayered maze of counseling children with disabilities must honestly explore their positive and negative preconceptions about people with disabilities. Counselors should understand and confront ableism, defined as “the discrimination or prejudice against individuals with disabilities” (Ableism, 2015). Furthermore, counselors should examine and challenge their own disability stereotypes prior to entering the counseling room with clients impacted by disability. Scope (2014), a disability-related charity in the United Kingdom, challenges ableism in the initiative “End the Awkward” found on the their website (http://www.scope.org.uk/awkward). This site allows readers to take an informal quiz to see if they are an “ambassador of cool” or a “captain awkward” around people with disabilities and also a link to watch short television advertisements designed to decrease awkwardness around individuals with disabilities. Helping professionals need to internally clarify the distinction between empathy and sympathy. Counselors can invite open discussion about the disability, as they would invite clients to share information about any subculture, so they feel free to clarify pertinent aspects of their lives and disability in counseling that might otherwise go unaddressed.

 

Helping professionals also should use non-handicapping language to affirm the individuality and personhood of clients. The Publication Manual of the American Psychological Association (American Psychological Association, 2010) has provided the following recommendations for unbiased terminology in research and academic writing:

 

The overall principle for “nonhandicapping language” is to maintain the integrity (worth) of all individuals as human beings. Avoid language that objectifies a person by her or his condition (e.g., autistic, neurotic), that uses pictorial metaphors (e.g., wheelchair bound or confined to a wheelchair), that uses excessive and negative labels (e.g., AIDS victim, brain damaged), or that can be regarded as a slur (e.g., cripple, invalid). Use people-first language, and do not focus on the individual’s disabling or chronic condition (e.g., person with paraplegia, youth with autism). Also use people-first language to describe groups of people with disabilities. For instance, say people with intellectual disabilities in contrast to the retarded (University of Kansas, Research and Training Center on Independent Living, 2008).

 

Avoid euphemisms that are condescending when describing individuals with disabilities (e.g., special, physically challenged, handi-capable). Some people with disabilities consider these terms patronizing and offensive. When writing about populations with disabilities or participants, emphasize both capabilities and concerns to avoid reducing them to a “bundle of deficiencies” (Rappaport, 1977). Do not refer to individuals with disabilities as patients or cases unless the context is within a hospital or clinical setting. (p. 76)

 

Children with Disabilities and the Family System

 

The family of a newborn diagnosed with a disability attempts to become acquainted with the infant and gain parenting skills, while still in a bustling neonatal intensive care unit. The family may be experiencing what McHugh (1968) called anomie, which is the idea that life is no longer normal, does not make sense, and is out of one’s control. The family’s experience may include focusing on the physician’s words, hearing the startling news that their child is receiving the diagnosis of lifelong disability, and considering what impact the disability will have on their child and family. Simultaneously, numerous specialists and nurses may be verbally giving the parents large amounts of vital, unfamiliar information in complex medical terminology, while evaluating how the parents are adjusting. The parents may be asked to make urgent life-altering medical decisions about surgeries that will affect their child’s well-being. Helping professionals must realize that parents need time to adapt to this life-changing situation.

 

Normalization

Parents who have not lived with a disability as a part of their lives need time to absorb the impact of the disability on their child and family as they move through anomie into the period that Seligman and Darling (2007) called normalization and resume the activities that were punctuated by the adjustment to the disability. Families acclimate to a new normal that contains a member with a disability. Gradually parents become capable of a knowledgeable dialogue with the medical community and may even inform physicians of promising treatments for their child, eventually realizing that they and their child(ren) are capably managing the practicalities of the disability, gaining needed services, and coping when unexpected changes and challenges arise.

 

During normalization, family members strive to help each other, and they build satisfying experiences and memories as they travel through the family life cycle. This process is neither easy nor quick; it can be gut-wrenchingly painful. However, it can produce much personal growth, the shifting of previously held values and priorities, and the satisfaction of a job well done. The process of normalization is not, as some assume, an insurmountable burden to bear, but rather a growth-producing challenge that can be met, sometimes joyfully. Counselors should beware of assuming that all children with disabilities and their families contain pathology. Many families have the internal and external resources to adapt to the disability over time without the need for professional intervention. Helping professionals should avoid referring to these families and children as special, as this term minimizes and unintentionally disrespects the effort required by ordinary people who face extraordinary challenges while meeting the other demands of daily living.

 

Parents’ Adjustment to the Diagnosis

People assume that parents whose children receive a disability diagnosis at birth are grieving the loss of an ideal perfect child. I suggest that the parents have grown to love the child prenatally and are grieving what their actual child is experiencing or may experience throughout life. The parents may struggle with the pain of relaying the diagnosis to siblings, grandparents and extended family members. Olshansky (1962), one of the initial researchers of families of children who have cognitive disabilities, recommended that chronic grief is an expected reaction of a caring parent to parenting a child with a disability and much more useful than the oversimplified idea of acceptance or rejection.

 

Some developmental disabilities are discovered prenatally or shortly after birth, or result from premature birth. Some disabilities are diagnosed later in childhood, as parents notice missed developmental milestones or the child loses previously-acquired skills through illness, accident or physical abuse. Other parents may suspect a disability in their child prior to receiving an official diagnosis. Counselors should remember that the pang of sadness a parent may feel when his or her child misses a developmental milestone or experiences social stigma is normal and does not mean that parents are coping poorly.

 

Parents who are trying to be hopeful are not necessarily denying the disability. Automatically applying diagnoses from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013) to the parent’s reaction to an initial diagnosis of disability in their child can add additional stress to the family system. Family members of children with disabilities may be inclined toward mental health difficulties that do not interfere with normal life functioning until the additional stress of the disability and the requirements for managing it overload the person’s coping skills, either temporarily or over time. The process of normalization takes time to unfold. Helping professionals should build a caring relationship with the family at the time of diagnosis and be available later if mental health issues begin to interfere with normal functioning. Counselors should use their clinical skills of differential diagnosis to understand and unearth the interplay between the parent’s orientation to disability and his or her conceptualization of disability identity to avoid framing a mindset as a mental health disorder.

 

The child’s parents or siblings may have psychiatric diagnoses or relational difficulties that predate the child’s disability diagnosis. Such issues may interfere with family resilience and the process of normalizing the disability and promoting healthy child development. Addictions, anxiety, depression, adult attention-deficit/hyperactivity disorder and other diagnoses can impede parental well-being and effective parenting. Thompson and Gustafson (1996) suggested that improved child development and adaptation to chronic childhood illness are associated with parental social support, adjustment and decreased stress. Elman (1991) suggested the need for counseling depressed family members. Crnic and Greenberg (1990) indicated that decreased competence in children is related to parental personal stress that interferes with effective parent–child communication. After many years of counseling families, I have come to believe that the family system can operate more smoothly if the individual members address mental health issues that impede marital satisfaction, family cohesion, conflict resolution, stress management, child rearing, medical management and other positive coping skills.

 

The birth order of a child with a disability can change the future family structure as the parents contemplate whether to have additional children. If the child with a disability is the parents’ firstborn and the disability has a genetic component, additional children may share the same disability, in a milder or more severe form. Parents may consult geneticists to explore the probabilities of a recurrence of the disability while they consider their ability to incorporate various scenarios into their lives. Childhood disabilities have direct and indirect psychosocial and financial costs for families. Seligman and Darling (2007) discussed direct costs of adaptive equipment, therapy and child care, and indirect costs like fees for housing modifications, work absences, and parental difficulty for career advancement. Sometimes one parent chooses not to work outside the home in order to be available for tasks related to managing the disability, a decision that reduces the family’s income. Regardless of the counselor’s or geneticist’s viewpoints, the decision to pursue additional children can be a complex, grueling decision for individuals whose convictions do not give them the option of attempting to conceive and then terminating a life prenatally if a disability is detected, especially for parents who already love a prior child with that or another disability.

 

Self-Concept Development among Children with Disabilities

The child with the disability develops opinions about the family and himself or herself. Children create a sense of self from the reflections they see in their interactions with others. Unfortunately, people with cognitive, emotional or physical differences encounter distorted mirrors daily. The communication they have with others often is filtered through an unspoken screen of ableism and stigma. In Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities, Snow (2001) described the Euro-American history of disability and myths. When the child encounters a person who has not had close friendships with anyone with disabilities, the person may display uncomfortable, awkward behavior around the child. The person may stare, avoid eye contact, treat the child with pity, act like the child is “special,” speak to the parents instead of the child or act in other confusing ways that pose barriers to intimacy. Children with disabilities sometimes do not question the interpretations of others and may begin to believe that anomalies are bad and that they are inherently bad, rather than just different. Children with disabilities also may not realize that the awkwardness in the room arises from discomfort in the other person and may wonder what is wrong with them.

 

Though people with disabilities are a natural part of society, they continually encounter barriers to full participation in society. In a society containing environmental and attitudinal barriers—for example, the lack of ramps or curb cuts necessary for people in wheelchairs to navigate their community—the simplest of tasks can be continually inconvenient.

 

Counselors must recognize that the disability is the child’s constant companion, 24 hours a day, 7 days a week, which may include a complex medical condition that affects various parts of the body and its functions, possibly resulting in pain. The vocabularies of children with disabilities may include medical terminology and treatments that are complicated to understand and time consuming to accomplish. The child may have a visible disability that is always on display for others’ comments and stares; alternatively, the child may have a disability that is hidden and misinterpreted by people in the community. Until one accompanies a person with a visible disability in public, one does not even realize what a luxury it is to go about daily tasks without others stopping to look for extended amounts of time with expressions of wide-eyed shock or curiosity. Counselors can teach children without disabilities to react less awkwardly around children who have disabilities.

 

Counselors should remember that each child and family is unique, but be aware that children with disabilities are more like children without disabilities than they are different. They simply vary in some way. The child may be in counseling because of internal challenges resulting from the disability or external emotional, social, attitudinal, educational or physical barriers to inclusion. However, the child may be in counseling for a difficulty that would arise even if there were no disability. It is helpful for children with disabilities to realize that some of the struggles they encounter are common to all children.

 

The Emotional Toll of Services

Community services, such as Respite Care and Individual Education Plans, are available to assist children with disabilities and their families with some of the challenges presented by the disability. People are vetted to see if they qualify for services and terms from the medical model of disability are utilized. Unfortunately, in order to receive services designed to maximize potential, children with disabilities must interact with agency staff members who discuss and emphasize deficits and rehabilitation in their presence. Children with disabilities may find the language and terminology insulting and demoralizing, considering that they have not had an accident and do not feel the need to be compared or repaired.

 

The disability subculture is not homogenous. Developmental disabilities include spina bifida, cerebral palsy, diseases of the muscles and bones, neurological disorders, craniofacial deformities, metabolic disorders, endocrine disorders, seizure disorders, cleft palate, cleft lip, visual impairment and blindness, hearing impairment and deafness, mental retardation, attention-deficit/hyperactivity disorder, learning disabilities, autism, chromosome and genetic disorders, and numerous others, including those that are extremely rare and possibly unnamed. Children and families in these various subgroups have some experiences in common and other distinct differences due to the various traits, challenges, onset and societal reactions to their particular disabilities.

 

Complex Client Group

Counseling children with developmental disabilities is like working a complex three-dimensional puzzle. Each individual child is as distinctive as a fingerprint. The child is a member of a family that has its own characteristics, rules and roles. The child and his or her family members’ temperaments affect reactions to a disability. Within any given family, there may be varying opinions among members about how to handle the disability or avoid dealing with it, which can impact family interactions. Children with handicaps come from a variety of ethnic cultures and heritages that influence the adjustment of the family members’ reactions to the child’s differences.

 

Spirituality

Counselors should not underestimate the benefits that some children with disabilities and their families derive from strong connections to their faith or other forms of spirituality, if they are not part of a religious community. Seligman and Darling (2007) wrote that some religious communities contribute a great deal of support to the families of children with disabilities. Poston and Turnbull (2004) discovered that other families have difficulty finding a religious group that will incorporate their child and family into the faith community. They reported that having a child with a disability, at times, is the precipitating factor to the development of spirituality in family members. Schiele (2000) and Parham (2002) proposed that aspects of the Afrocentric service models are beneficial when working with African Americans since these models incorporate interdependence, collectivity, affect and spirituality. These benefits may be generalizable to other ethnic groups. McCarthy (1995) encouraged counselors to explore and use spiritual ideas and techniques to benefit the physical and mental well-being of clients.

 

Belief in a benevolent power or ideological concept can sustain exhausted, discouraged individuals when situations are beyond their control despite their sincere proactive efforts. During those moments when they feel that they cannot continue without despair, they can let go and allow God, a higher power or whatever spirituality they cling to for sustenance intervene. For example, when sending their day-old neonate into spinal surgery, religious parents may draw comfort from the belief that a divine being continues with their infant and the surgeon beyond the operating room doors that separate them from their child. Children whom physicians predict will die continue against all scientific evidence to live and thrive; sometimes parents have supernatural theories about these outcomes. Turnbull, Turnbull, Erwin, and Soodak (2006) referred to spirituality as the way that people derive meaning in their lives and interact with the sacred. According to Skinner, Correa, Skinner, and Bailey (2001), spirituality can influence whether a family considers the addition of a member with a disability to be a blessing or retribution for an offense (Chan, 1998; Chan & Lee 2004; Rolland, 2003). Frisco (as cited in Seligman & Darling, 2007) indicated that the majority of the grandparents surveyed reported that religion and belief in God helped them more comfortably accept a disability in their grandchild.

 

Multiple Interconnecting Systems

The child and his or her family have multiple interconnecting systems to navigate, while attempting to achieve the normal activities of being a family and helping the child accomplish typical developmental tasks, without reducing this goal to a tedious, life-draining behavioral chart that devalues the child’s personhood and the spontaneity and freedom of childhood. Nichols (1984) considered an open system to be a group of interconnected parts of a whole that interact with each other and the larger environment around information, material and energy. General systems theory and cybernetics provide concepts that assist counselors in studying the multiple elements that constitute the collective experience of living with a disability. These systems may include physicians, therapists, schools, tutors, insurance companies, respite care services, disability advocacy and support groups, community activities, neighbors, playmates, extended family, and other groups of people who make up the ever-evolving gears of an interacting environment that contains the child and his or her nuclear family subsystem. Miller (1995) affirmed that a well-functioning psychosocial environment is vital to the child’s healthy maturation, and counselors can work with children and their families to reduce feelings of being overwhelmed.

 

Disabilities are not as inherently stressful as what parents go through while trying to help their child with optimal growth and development. Acquiring adaptive equipment, services, educational accommodations and community participation can be tedious and frustrating. Parents often are required to contact busy physicians, educators, automated insurance provider telephone messages and agency coordinators to get documentation for equipment that they need in order to accomplish simple tasks that the dominant culture takes for granted. Normal activities like comfortable body positioning, eating, toileting, ambulating and being integrated into school classrooms can be prolonged, inordinately exhausting, emotionally draining and time consuming.

 

Once services and equipment are acquired, the family unit may become part of a large, complex, constantly evolving system including, depending on the particular disability, educators, adapted physical educators, therapists (e.g., physical, occupational, speech, respiratory), tutors, dieticians and medical specialists (e.g., pediatricians, gastroenterologists, orthopedic surgeons, cardiologists, urologists, audiologists). Many disabilities require adaptive equipment that is initially unfamiliar to the family. Medical professionals tell parents and their children about assistive health devices that others with similar disabilities have found helpful. The family may need time to adjust to the reality that their child has to use the device, to examine the risks and benefits of equipment and treatments for the disability, and to find someone who provides the service locally.

 

Health devices are often expensive and must be paid for through insurance, government programs or private payments. Obtaining the equipment may be a lengthy, convoluted process that involves repeated negotiation with insurance providers and resubmitting payment requests or searching out alternative funding sources if insurance payment is denied. Once the adaptive equipment arrives, there are often therapy appointments to individualize the fit of the equipment to the child, teach the parents and child how to use the product, coax the child to use the aids, and check to see that the product is doing no harm to the child. It can take weeks of trial and error to modify equipment that is problematic. This process may repeat often as the child grows older.

 

Children may want to participate in activities that are outside the realm of the Americans with Disabilities Act. Parents may find themselves having to reassure and encourage the people who run these programs to include their child. This process may involve educating Scout leaders, religion teachers, preschool staff, parents of the child’s classmates, camp staff and others about the disability and how to make modifications to include the child, and also may involve calming fears that it will be too difficult for the staff or the child to manage or too dangerous for the child to participate. Most children with limitations want the same independent adventure opportunities as other children; to try new experiences; risk, fail, try again and succeed; and sometimes surpass others’ expectations for them.

 

It is important to help families see that their child needs to be surrounded by a support system that has challenged negative assumptions about people with disabilities. Children with an observable disability do not have the gift of anonymity that most people take for granted. They need comfortable places to just be themselves, recharge emotionally and exist as a member of the group. They need the enduring support and friendship from others who are easy, normal and natural in their interactions with the children, to inoculate them against assaults to their worth that they can encounter in the larger society. On some level, children may think that their parents are giving them affirmation because of their roles as parents. Children need to know that people other than their parents also acknowledge their skills, temperament, accomplishments and personhood. Children need interactions with people who allow them to be authentic and respond genuinely and honestly; thus, children learn how to be in healthy relationships.

 

Interventions to Disable Ableism and Promote Friendships

 

Parents of children without disabilities sometimes tell their children not to stare at children with disabilities but may not make a suggestion for a replacement behavior, like saying, “hello.” Thus normal opportunities to interact are missed and taboos that encourage shunning and bullying continue. This behavior can contribute to unnecessary adjustment problems in adulthood that Cadman, Boyle, Szatmari, and Offord (1987) and Rutter, Tizard, and Whitmore (1970) have suggested are related to experiencing social rejection early in one’s life. To promote integration and change attitudes, it would be helpful for school counselors to offer diversity training concerning disabilities for students and parents throughout the school population. Informational sheets could be sent home in the beginning of the school year or brief presentations could be included at parent meetings. Some of the child’s classmates may grow up and one day become parents of children with disabilities.

 

Social Skills Development

Miller (1995) reminded us that the peer social system is the main area where children develop and hone relationship-building and social problem-solving skills. However, some children with disabilities have trouble forming relationships with their peers for a variety of reasons. They may lack the opportunity to socialize with peers in a regular setting or have trouble ambulating to where children are playing. They may have a human aide who impedes normal peer interactions, tagging along to manage a healthcare issue. They may not understand the social mores of others their age because of so much time spent with parents and adult health care providers or due to aspects of their disability. In addition, service providers may talk to parents about the child as if the child is not present. Parents can learn to redirect physicians, nurses and other service providers to speak to the child in age-appropriate language.

 

Tovray and Wilson-Portuondo (1995) suggested that children may need formal help to learn social skills for developing friendships if they do not notice or understand social cues and nonverbal messages from others. Children with disabilities may struggle with nonverbal learning issues or characteristics on the autism spectrum, making engaging or understanding others difficult. They also may have behavioral disabilities that alienate other children or result in the continual loss of recess privileges. They may have medical therapies after school and daily tasks to complete between visits. Children with disabilities may spend an unreasonable amount of time trying unsuccessfully to complete homework assignments. Counselors can help a child with a disability by making a referral to a neuropsychologist to determine strengths and weaknesses, and then the counselor, parents, neuropsychologist, teachers and tutors can help the child develop more effective study and executive functioning skills that match his or her temperament and learning style. Parents and counselors can work together so that children with disabilities have opportunities to be and not just do activities.

 

Educating Peers to Reduce Isolation

Sometimes children ask questions undiplomatically. For example, a preschooler with spina bifida might be asked, “Why do you walk weird?” Some parents of children with disabilities visit the school on the child’s first day and speak to the child’s classmates in an attempt to decrease painful queries that can invite social anxiety. Preparing the class as a group also frees peers from being preoccupied with unanswered questions. If professionals help the child and family create and practice an elevator speech, perhaps these unhelpful questions will occur less often. The elevator speech can be a few sentences to explain the disability when meeting new people, which could prevent the disability from becoming a taboo subject. Talking openly can relieve other children’s unrealistic fears of catching the disability.

 

Returning to the previous example of a preschooler with spina bifida, the child could introduce herself by name and say something to let her classmates know what they have in common, like, “I am 5 years old. I have a brother and sister, and two dogs. Who else has a brother and sister? Does anyone else have a dog? I like to play, read books and eat ice cream. I am looking forward to being your friend.” After this joining statement, she could then give a brief age-appropriate description naming her disability and saying how it affects her and others, as follows: “I have spina bifida, so some of the nerves in my back don’t talk to my legs to tell them to feel or move. The other parts of my legs have to work harder, so I walk differently. I’ll pass around my old braces, like the ones I wear to help me walk. Please don’t mess with my wheelchair unless I ask for help. You can’t catch spina bifida like you do a cold. I don’t run so please walk slower, so I can keep up. Let’s talk and see how we can all play together.” Sometimes the child may not have the social or cognitive skills for public speaking or may simply prefer that the parent give the elevator speech. However, the child can learn self-advocacy by sharing some part of the elevator talk. After the elevator speech, the parent can ask if anyone has any questions. Parents sometimes ask educators to send a letter home to the parents of their child’s typical classmates with a brief description of the disability so that parents understand and include the child in after-school invitations that are extended to the rest of the class. Then the child and peers can begin the school year ready to focus on getting to know each other, forming friendships and learning classroom content.

 

This introduction could reduce the isolation of children with disabilities by demystifying their differences and allowing them to assimilate into the group. Children with disabilities, their classmates, school staff and families need practical skills for dealing with bullies. Parents can search for schools that take bullying and violence prevention seriously and have a school strategy in place to discourage bullying. Bullies may try their unacceptable behaviors on various class members; however, they tend to choose people who are alone to be their victims of repetitive bullying. Children with disabilities can learn strategies for standing up to the bully. Classmates of children with disabilities can acquire the information necessary to become friends and allies for the student in areas where there may be less adult supervision such as the lunchroom, bathrooms, hallways, or on the playground. They can help intervene to include the child with a disability in pleasant encounters with children from other classrooms and also speak on behalf of their friend when others ask questions or make nasty comments. Counselors can work with the school staff, parents and children to develop school-wide anti-bullying campaigns that teach children to counteract bullying and become allies for one another.

 

Preventing Isolation by Building Peer Support

The child and family may share their culture, religion and other signs of unity and cohesion. However, if the child’s exceptionality is not inherited, he or she may have the difficult experience of being the only member of his family with the anomaly. The child may benefit from the support of peers with the same disability to spend time with and compare experiences; or just be with colleagues who are already familiar with the disability and do not require explanations. Counselors can help parents find camps and support groups for both the family and child that include both children with disabilities and typical peers. Children need older, successful role models with disabilities who inspire them to persevere when they are discouraged. They need mentors, with and without disabilities, who challenge them to dream and make continual progress to accomplish their dreams.

 

Recommendations for Counselors

 

Counselors can be more aware of areas in which they can be quite helpful. Counselors can intervene in the medical system to provide newborns with disabilities and their parents with natural settings that allow relaxed time together to promote attachment and bonding. Counselors also can operate from a systemic, strengths-based model in order to best respect and support the child and family. Throughout the child’s development, counselors and families can collaborate to promote the development of age-appropriate skill acquisition, protective yet permeable personal boundaries, self-awareness, positive self-esteem, social skills, relationship development, the ability to be resilient in the face of stigma, and the opportunity to transition to the adult roles of employment, independent living, dating and family formation.

 

Systemic, Strengths-Based Counseling Models

Allen (1994) indicated that counselors and theorists operating from various individually oriented counseling perspectives assume that the origin of dysfunction and self-destructive behaviors in an individual is an internally defective self, psyche or physiological flaw. Hahn (1993) noted that the medical understanding of disability relates to organic pathology or impairment. Counselors who operate from a family systems model believe that difficult individual behavior is best understood as one piece of a larger interacting whole, such as the family or society, which is greater than the sum of its parts. The behaviors of individual members of the system are considered reflections of what is happening in the larger system. Rather than identifying the individual as a patient to be fixed, Nichols (1984) stated that the system should be explored to identify pathology in the interactions between people. Oliver (1996) did not believe that disabilities are intrinsically bad, and Linton (1998) reported that many people have disability pride. Disability pride refers to recognition that society is enriched by the distinctive positive voices, identities, thoughts, awareness, lifestyle examples and literature produced by individuals with disabilities. Seligman and Darling (2007) suggested that professionals who adopt a medical model of pathology may presume that the birth of a child with a disability will lead to maladaptive family functioning and therefore the implementation of intrusive, undesired interventions from service providers. I advocate the use of a collaborative, systemic, strengths-based counseling model due to the complex interconnected systems that make up the environment of children with disabilities and because it is more respectful of the child and family’s disability orientations and ability to prosper within a complicated context. It is erroneous, unkind and disrespectful to label a child who is capably using his resources to the best of his ability as unhealthy simply because he varies from the norm.

 

A systemic, strengths-based counseling model also respects the inherent worth of the child with a disability by not presuming that he or she is the identified patient. He or she is incredibly resilient in the face of daily challenges that would make many adults cower and yet gets up each day with renewed hope and moves forward into the future. Not only does this child face the same developmental tasks of childhood as his or her peers, but he or she must use additional thought, energy and time to develop and implement strategies to compensate for personal variations that may make the accomplishment of these tasks extremely difficult and time consuming.

 

One goal of counselors working with children with disabilities is to acknowledge the personhood and accomplishments of the children and their incredible inner fortitude, without categorizing them as more special than any other child. In a society where people are compared to a perceived norm, this child was either born with or acquired a variation that has been characterized as less than the norm, and labeled a disability, impairment, handicap or developmental disorder. The terms are pejorative; the connotations of the words just mentioned are as follows: not able, broken, defective, of lesser quality and developing incorrectly.

 

Counselors might also wonder how separation experiences impact attachment and bonding from the child’s perspective. Does the child experience feelings of abandonment and fear at a time when he or she lacks the ability to conceptualize or express them? A question for counselors and researchers to consider is whether there is an enduring impact from these experiences. Some parents initially reject the child with a disability or fear that they will not be able to manage the infant’s medical needs. Family members who have access to each other usually bond. Seligman and Darling (2007) reported that attachment can be difficult for some parents when aspects of the child’s disability interfere with the baby responding positively to his or her parents’ overtures.

 

Parents and counselors can help children with disabilities develop a healthy sense of self and determine what behavior is acceptable in others, and under what conditions. With so many people entering and leaving the child’s life, it is helpful for parents and counselors to help children understand different types of relationships and what to expect from them. They need to be protected from physical, sexual and emotional abuse and learn refusal skills in situations where their trust and cooperation are exploited.

 

Promoting Self-Awareness

Children with disabilities need self-awareness. Counselors have the opportunity to assist parents of young children with disabilities by suggesting that parents play games with their toddlers to help them learn body parts and their functions, including the terms that name their disability since it is also a natural part of them. It is not a defining part, but rather an aspect of themselves that they can become aware of and discuss, such as being adopted or having green eyes. Once the disability is assimilated into the family, family members go about the business of life; their child with a disability is just another member of the family.

 

Helping Children with Disabilities, Siblings and Parents Deal with Stigma

Siblings can help children with disabilities begin to interact differently with peers by accustoming them to the support, disagreements and jealously common between brothers and sisters. Children with disabilities encounter people within the larger community who may not be familiar with disabilities or the concept that disabilities occur among regular people. Children with disabilities and their siblings need to be prepared ahead of time for ableism so that they are not surprised or heartbroken by the reactions they receive from people outside their home. At home, no one stares at children with disabilities, mocks their disability-related differences or calls them negative names. Unfortunately, well-adjusted children with disabilities may encounter cruelty from other children whom they meet outside their homes and primary social networks. They need to know that the dysfunction in these interactions does not originate in them, but rather are due to a lack of knowledge in other people. Children, parents and siblings need help interacting with the larger society around issues of being different and educating others about their disabilities. Sibling groups can be helpful for children who sometimes feel torn between conflicting emotions about their sibling with a disability. Goffman (1963) said that family members of children with disabilities sometimes receive courtesy stigma when they are in public with their family member who has a disability. Children have reported feeling embarrassed by their sibling or guilty for excluding them or not defending them. At other times children have been shunned for standing up for their sibling. Siblings may sometimes be jealous of the extra attention their sibling’s disability requires, assist with their sibling’s care or operate independently.

 

The Importance of Being, While Also Acquiring Skills

Children need time for unstructured play to develop their imagination, gain independence, explore hobbies and experience leisure. They need opportunities to develop the daily living skills necessary to achieve autonomy by adulthood. In addition to learning to prepare food, clean, do laundry, manage money, monitor appointments and keep a home from dissolving into chaos, they will need to gradually take over the medical management of their disability if they intend to maintain their health. Children with disabilities and their families need extreme time-management skills in order to accomplish this herculean task. Counselors or life coaches can help families develop a long-term family vision. They also can help the child and family develop short-term and long-term goals for the child with the disability and problem-solving skills to overcome obstacles to their vision and goals. Parents and children may find it helpful to learn assertiveness skills so they can coordinate homework tasks assigned by support services and say no to excessive demands from numerous systems that add up to more than a 24-hour day.

 

Helping Adolescents Progress to Adulthood

When a disability is added to the list of difficulties Haley (1997) described, one may discover additional requirements for launching a young adult with disabilities. Some states require adolescents with disabilities to be evaluated before they can apply for a driver’s license, and their vehicles may need costly accommodations. Some people with disabilities are refused the opportunity to obtain a driver’s license and must make other plans for transportation. A young person with a disability needs a plan for vocational career development, job training, higher education or some means of financial support. Plans for independent living, a group home, or a nursing home, must be made prior to leaving the family home. Such plans often include meetings with a team to develop an individual education transition plan during secondary school, and meetings with rehabilitation counselors after high school to plan for college, vocational training or employment. Parents and students spend additional time and energy to acquire the documentation required to obtain these services. Counselors and life coaches can help the family members prioritize the various activities competing for their time, energy and financial resources. Professionals may encourage creativity around informal methods of achieving formal goals that do not require the child and family to expend more energy acquiring and maintaining the services than warranted by the potential relief obtained from the services.

 

Other Counseling Services

Counselors have so many tools to offer children with disabilities and their families throughout the family life cycle. They can offer concepts and techniques to deal with grief and anomie at the initial diagnosis of a disability, the chronic grief that emerges when a developmental milestone is missed, repeated encounters with ableism, or unsuccessful operations and physical therapy. Some childhood disabilities and chronic illnesses end in death at an early age. Counselors and hospice staff can help families prepare for this untimely departure.

 

Relaxation exercises can be helpful to families after a busy day of preoperative medical appointments, immediately prior to a surgery or while waiting for a surgery to end. A child having a painful medical procedure or frightening experience like Magnetic Resonance Imaging also can use relaxation as a method to cope. Cognitive therapy can help children and families reframe complex medical issues and disabilities from seemingly overwhelming tragedies to neutral manageable situations within their capabilities. Reframing can allow parents who regret missing work to spend hours in physician’s offices, X-ray labs or therapy appointments to see the experiences as valuable times—opportunities to really get to know the child and bond around lived experiences.

 

Learning to use communication skills allows parents to request that nonurgent operations and treatments be scheduled at times that do not interrupt other activities, such as birthdays, weddings and exciting field trips with classmates. Counselors can teach communication skills that can be used within the family to explore rigid roles that may not allow members the flexibility to effectively cope with the added chores that accompany a disability without sacrificing the real needs of any one family member.

 

Counselors can assist families and children in learning vital time-management and decision-making skills. They can help parents see that self-care is useful and that it is fine to ask for help from each other and use resources outside the family to relieve caregiver stress. Counselors can help families learn to develop a stress management plan that utilizes positive rather than negative coping skills during times of extreme stress. If families and children learn assertiveness skills, they may be able to release passivity or aggression. Counselors can help children and families reduce anxiety and depression throughout the lifespan, cultivate humor and gratitude, and juggle a variety of activities and emotions in the pursuit of a balanced life. Counselors may use their own creativity to generate original ideas for assisting children with disabilities and their families.

 

Conclusion

 

This article provides significant ideas to consider when working with individuals with disabilities and their families; there is much to learn through exploring relevant research and anecdotal information regarding disability awareness. An understanding of systemic theory is invaluable when working with the complex interconnecting systems that make up the environment of a child with a disability. Counselors may explore disability identities and orientations within the individual with a disability, the family and society. Professionals can consider interventions concerning identity formation in the person with a disability by promoting self-awareness, boundary development, and the understanding of and externalization of ableism for both the child and family members. Mental health professionals have the opportunity to confront the stigma associated with disabilities and service acquisition. Counselors can use reframing to normalize variations within students and decrease pity. They can partner with the child and his or her parents to educate the child’s classmates and their parents, school personnel, and community about the disability and inclusive practices that prevent social isolation and encourage interactions that disarm bullying and myths about people with disabilities. Counselors can offer practical help to children who may struggle with social skills, study skills, communication, assertiveness, stress management, spirituality, transitioning from childhood to adulthood, and the importance of being or experiencing one’s humanity rather than just accomplishing tasks. In addition to using the introductory ideas provided in the article, counselors are invited to creatively adapt additional theories and techniques to support children with disabilities and their families.

 

Conflict of Interest and Funding Disclosure

The author reported no conflict of

interest or funding contributions for

the development of this manuscript.

 

References

Ableism. (2015). In Merriam-Webster’s online dictionary. Retrieved from http://www.merriam-webster.com/dictionary/ableism

Allen, D. M. (1994). A family systems approach to individual psychotherapy therapy. Northvale, NJ: Aronson.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

American Psychological Association. (2010). Publication manual of the American Psychological Association (6th ed.). Washington, DC: Author.

Cadman, D., Boyle, M., Szatmari, P., & Offord, D. R. (1987). Chronic illness, disability, and mental and social well-being: Findings of the Ontario Child Health Study. Pediatrics, 79, 805–813.

Chan, S. (1998). Families with Asian roots. In E. W. Lynch & M. J. Hanson (Eds.), Developing cross-cultural competence: A guide for working with children and their families (2nd ed., pp. 251–354). Baltimore, MD: Brookes.

Chan, S., & Lee, E. (2004). Families with Asian roots. In E. W. Lynch & M. J. Hanson (Eds.), Developing cross-cultural competence: A guide for working with children and their families (3rd ed., pp. 219–298). Baltimore, MD: Brookes.

Crnic, K. A., & Greenberg, M. T. (1990). Minor parenting stresses with young children. Child Development, 61, 1628–1637.

Darling, R. B. (2003). Toward a model of changing disability identities: A proposed typology and research agenda. Disability & Society, 18, 881–895. doi:10.1080/0968759032000127308

Elman, N. S. (1991). Family therapy. In M. Seligman (Ed.), The family with a handicapped child (2nd ed., pp. 369–406). Boston, MA: Allyn & Bacon.

Gilson, S. F., & DePoy, E. (2004). Disability, identity, and cultural diversity. Review of Disability Studies, 1, 16–23.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.

Hahn, H. (1993). The political implications of disability definitions and data. Journal of Disability Policy Studies, 4, 41–52. doi:10.1177/104420739300400203

Haley, J. (1997). Leaving home: The therapy of disturbed young people (2nd ed.). Levittown, PA: Brunner/Mazel.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York, NY: New York University Press.

McCarthy, H. (1995). Integrating spirituality into rehabilitation in a technocratic society. Rehabilitation Education, 9, 87–95.

McHugh, P. (1968). Defining the situation: The organization of meaning in social interaction. Indianapolis, IN: Bobbs-Merrill.

Miller, B. D. (1995). Promoting healthy function and development in chronically ill children: A primary care approach. Family Systems Medicine, 13, 187–200.

Nichols, M. (1984). Family therapy: Concepts and methods. New York, NY: Gardner Press.

Oliver, M. (1996). Understanding disability: From theory to practice. New York, NY: St. Martin’s Press.

Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child. Social Casework, 43, 190–193.

Parham, T. A. (2002). Counseling models for African Americans. In T. A. Parham (Ed.), Counseling persons of African descent: Raising the bar of practitioner competence (pp. 100–118). Thousand Oaks, CA: Sage.

Poston, D. J., & Turnbull, A. P. (2004). Role of spirituality and religion in family quality of life for families of children with disabilities. Education and Training in Developmental Disabilities, 39, 95–108.

Rolland, J. S. (2003). Mastering family challenges in illness and disability. In F. Walsh (Ed.), Normal family processes: Growing diversity and complexity (3rd ed., pp. 611–630). New York, NY: Guilford Press.

Rutter, M., Tizard, J., & Whitmore, K. (1970). Education, health, and behavior. London, England: Longman.

Schiele, J. H. (2000). Human services and the Afrocentric paradigm. New York, NY: Haworth Press.

Scope. (2014). End the awkward. Retrieved from http://www.scope.org.uk/awkward

Seligman, M., & Darling, R. B. (2007). Ordinary families, special children: A systems approach to childhood disability (3rd. ed.). New York, NY: Guilford Press.

Skinner, D. G., Correa, V., Skinner, M., & Bailey, D. B., Jr. (2001). Role of religion in the lives of Latino families of young children with developmental delays. American Journal on Mental Retardation, 106, 297–313.

Snow, K. (2001). Disability is natural: Revolutionary common sense for raising successful children with disabilities. Woodland Park, CO: BraveHeart Press.

Thompson, R. J., Jr., & Gustafson, K. E. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological Association.

Tovray, S., & Wilson-Portuondo, M. (1995). Helping your special needs child: A practical and reassuring resource guide. Rocklin, CA: Prima.

Turnbull, A. P., Turnbull, H. R., Erwin, E. J., & Soodak, L. C. (2006). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust. (5th ed.). Upper Saddle River, NJ: Prentice Hall.

 

Sherry Richmond-Frank, NCC, is the President of Creative Growth Counseling & Coaching, Inc. in Destrehan, LA. Correspondence may be addressed to Sherry Richmond-Frank, PO Box 1033, Destrehan, LA 70047, sherry@creative-growth.com.