Edward Franc Hudspeth
When conceptualizing this special issue, we had a basic idea of what might be included; however, as submissions arrived, it was evident that our basic definition of special needs was limited and could include much more when broadened. Therefore, the issue was reconceptualized as “Children with Special Needs and Circumstances.” It is my hope that when practitioners, researchers and faculty read this issue, each begins to see that the term special needs encompasses more than we think, because anything that hinders the optimal growth and development of a child constitutes a special need. In this issue, readers will find articles concerning fears, trauma, sensory processing disorder, foreign adoption, cystic fibrosis, spina bifida, homelessness, special education and parent–child interaction therapy.
Keywords: counseling, children, special needs, complex trauma
To set the stage for this special issue, to provide a foundation for understanding and to link the various articles, I encourage readers to conceptualize the impact of a special need through a complex trauma or developmental lens. Over the past 15 years, countless articles have reported and described the impact of chronic stress and adverse childhood experiences (Anda et al., 2006; Edwards et al., 2005) and the subsequent development of complex trauma. Complex and Developmental TraumaThe National Child Traumatic Stress Network (n.d.-a) has defined complex trauma as a series of traumatic experiences that are usually interpersonal in nature and lead to numerous long-term adverse effects on health and well-being. Similarly, van der Kolk, Roth, Pelcovitz, Sunday and Spinazzola (2005) described experiencing repeated traumatic events during childhood as developmental trauma. The duration and intensity of the traumatic experiences, as well as the age of onset of these experiences, can determine the outcome of both complex trauma and developmental trauma. Neuroscience research provides ample evidence of neurochemical and brain structural changes caused by complex trauma that result in affective and behavioral dysregulation (Lanius, Bluhm, & Frewen, 2011). Though the terms developmental trauma and complex trauma were originally used to represent repeated abuse or an accumulation of traumatic experiences, recent neuroscience research has extended these terms to other conditions and experiences. Copeland, Keeler, Angold, and Costello (2007) noted that a long-term physical illness may lead to complex trauma, while D’Andrea, Ford, Stolbach, Spinazzola, and van der Kolk (2012) and Finkelhor, Ormrod, and Turner (2007) reported that bullying also may lead to similar outcomes. Courtois (n.d.), as well as Ford and Courtois (2009), Vogt, King, and King (2007), and the National Child Traumatic Stress Network (n.d.-b), offered a more descriptive explanation and extensive list when they stated the following: Cumulative adversities faced by many persons, communities, ethno-cultural, religious, political, and sexual minority groups, and societies around the globe can also constitute forms of complex trauma. Some occur over the life course beginning in childhood and have some of the same developmental impacts described above. Others, occurring later in life, are often traumatic or potentially traumatic and can worsen the impact of early life complex trauma and cause the development of complex traumatic stress reactions. These adversities can include but are not limited to:
- Poverty and ongoing economic challenge and lack of essentials or other resources
- Community violence and the inability to escape/relocate
- Disenfranchised ethno-racial, religious, and/or sexual minority status and repercussions
- Incarceration and residential placement and ongoing threat and assault
- Ongoing sexual and physical re-victimization and re-traumatization in the family or other contexts, including prostitution and sexual slavery
- Human rights violations including political repression, genocide/“ethnic cleansing,” and torture
- Displacement, refugee status, and relocation
- War and combat involvement or exposure
- Developmental, intellectual, physical health, mental health/psychiatric, and age-related limitations, impairments, and challenges
- Exposure to death, dying, and the grotesque in emergency response work (para. 7)
Cook et al. (2005) stated that as a result of complex trauma, individuals experience impairments in (a) attachment, (b) affect regulation, (c) behavioral control, (d) cognition, (e) self-concept, and (f) sensory and motor development. Treatment recommendations include (a) being developmentally sensitive, (b) building on the safety and security of caregivers and community (e.g., teachers), and (c) addressing affective and behavioral dysregulation. Special Issue: Children with Special Needs and Circumstances The articles in this special issue provide implications for counselors and ways that specific special needs and circumstances may be addressed with individuals, families, schools and communities. In order to support the educational and emotional development of children and youth experiencing homelessness, Havlik and Bryan indicate that school counselors must first identify which students are experiencing homelessness in their school and then determine their specific needs. Some of these needs, to name a few, include violence, abuse, neglect, mental and physical health issues, and mobility issues. The authors note that once homeless children and their individual needs are identified, school counselors should engage the students within their schools and assist with collaborative efforts between school and community resources. Havlik and Bryan challenge schools counselors to seek out and participate in professional development regarding the policies related to individual needs of homeless students. Geddes Hall states that less than half of school counselor preparation programs include content related to special education in their training. Geddes Hall encourages school counselors to have a comprehensive knowledge of the specific needs of those receiving special education services, and she offers precise recommendations for how counselor educators can infuse special education content throughout a school counseling curriculum. She reflects that it is in the best interest of future school counselors, as well as the special students they will serve, to receive support and supervision during such experiences as they complete their programs. Buss, Warren, and Horton provide in-depth coverage of the short- and long-term impact of trauma on the physical, mental, emotional and social development of traumatized children that includes associated trajectories to adult mental and physical health conditions. The authors indicate that early intervention and treatment can minimize the social and emotional impact of a child’s exposure to a traumatic event. The authors also discuss the advantages of numerous evidence-based treatment strategies as well as the realistic limitations of these strategies. Across treatment methods, factors such as safety and attachment are paramount. Liu and Hazler delineate differences noted among adoptees from various countries. These differences include behavioral, social and emotional characteristics, as well as the adoptees’ proclivity to form an attachment with a primary caregiver. The authors demonstrate that pre-adoption characteristics are associated with smooth transitions during the adoption process as well as post-adoption integration. Liu and Hazler discuss ways that counselors may emphasize adoptee–parent relationships in which trust is a fundamental element. They provide specific recommendations for counselors and adoptive parents that ease the transition and support successful attachme Sheperis and colleagues acknowledge that counselors, whether working with children who have disruptive behavior or providing parenting training to families, should be knowledgeable of the application of various behavioral techniques in order to utilize them effectively and to teach them to parents. In their article, the authors review a wealth of research information related to one evidence-based method and demonstrate how this method may be useful when working with children with special needs. Sheperis and colleagues describe a session-by-session application of this model as well as report contemporary research about the model’s application to working with children with special needs. Leppma, Szente, and Brosch provide an overview of the current landscape of children’s fears to help delineate a contemporary, adaptive and holistic approach to treatment. The authors convey an image of fear and anxiety development that can be physically and mentally paralyzing for individuals who experience these states. In their treatment section, the authors outline an approach that addresses affect regulation and development of positive emotions, as well as inoculating the client against stress and supporting the development of resilience. They report on several studies that demonstrate the value of play in the development of self-efficacy, optimism and positive affect. Despite the fact that few within the world of counseling have written about the subject, Goodman-Scott and Lambert pull together many resources to conceptualize the special needs of children with sensory processing disorder (SPD). The authors provide a detailed description of the disorder and its subtypes and describe in detail appropriate assessment of the disorder. Goodman-Scott and Lambert recommend that counselors collaborate with occupational therapists in order to address the unique needs of children with SPD. They report that counselors can provide individual, group and family counseling modalities using solution-focused and cognitive-behavioral techniques to address children’s mental health needs and co-occurring disorders. Storlie and Baltrinic’s article illuminates the impact of a chronic disease on the individual, the caregivers and the counselors working with the family. They indicate that counselors working with children and families affected by cystic fibrosis (CF) should consider the physical and psychosocial challenges facing this special-needs population. The authors encourage counselors to be knowledgeable about CF so that they will be sensitive to the traumatic impact of this life-shortening disease on the child or adolescent with CF and caregivers. Storlie and Baltrinic offer suggestions for compassionate counseling as well as for avoiding compassion fatigue. In a personal account of rearing a child with spina bifida, Richmond-Frank expresses both the successes and shortcomings that she has experienced over nearly 3 decades. The author provides a thorough account of her experience as a parent of a child with special needs, as well as what she has to teach others who may be working with a child with special needs. As a professional counselor, as well as a parent of a special-needs child, Richmond-Frank provides readers with specific and realistic suggestions. She shares that a systemic, strengths-based counseling model respects the inherent worth of the child with a disability by not presuming that he or she is the identified patient. Conclusion From the special issue editor’s point of view, issues that are prolonged, intense and cumulative, and vary over developmental periods should be conceptualized through lenses that address the complexity of intermingled systems. By failing to see this complexity and all of its aspects, we fail to fully address the complexity of children with special needs and circumstances. Conflict of Interest and Funding Disclosure The author reported no conflict of interest or funding contributions for the development of this manuscript. References Anda, R. F., Felitti, V. J., Walker, J., Whitfield, C. L., Bremner, J. D., Perry, B. D., . . . Giles, W. H. (2006). The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology. European Archives of Psychiatry and Clinical Neurosciences, 256, 174–186. doi:10.1007/s00406-005-06244 Cook, A., Spinazzola, J., Ford, J., Lanktree, C., Blaustein, M., Cloitre, M., . . . van der Kolk, B. (2005). Complex trauma in children and adolescents. Psychiatric Annals, 35, 390–398. Copeland, W., Keeler, G., Angold, A., & Costello, J. (2007). Traumatic events and posttraumatic stress in childhood. Archives of General Psychiatry, 64, 577–584. Courtois, C. A. (n.d.). Understanding complex trauma, complex reactions, and treatment approaches. Retrieved from http://www.giftfromwithin.org/html/cptsd-understanding-treatment.html D’Andrea, W. D., Ford, J., Stolbach, B., Spinazzola, J., & van der Kolk, B. A. (2012). Understanding interpersonal trauma in children: Why we need a developmentally appropriate trauma diagnosis. American Journal of Orthopsychiatry, 82, 187–200. doi:10.1111/j.1939-0025.2012.01154.x Edwards, V. J., Anda, R. F., Dube, S. R., Dong, M., Chapman, D. F., & Felitti, V. J. (2005). The wide-ranging health consequences of adverse childhood experiences. In K. A. Kendall-Tackett & S. M. Giacomoni (Eds.), Child victimization: Maltreatment, bullying, and dating violence prevention and intervention (pp. 8-1–8-12). Kingston, NJ: Civic Research Institute. Finkelhor, D., Ormrod, R. K., & Turner, H. A. (2007). Poly-victimization: A neglect component in child victimization. Child Abuse and Neglect, 31, 7–26. doi:10.1016/j.chiabu.2006.06.008 Ford, J. D., & Courtois, C. A. (2009). Defining and understanding complex trauma and complex traumatic stress disorders. In C. A. Courtois & J. D. Ford (Eds.), Treating complex traumatic stress disorders: An evidence-based guide (pp.13–30). New York, NY: Guilford Press. Lanius, R. A., Bluhm, R. L., & Frewen, P. A. (2011). How understanding the neurobiology of complex post-traumatic stress disorder can inform clinical practice. A social cognitive and affective neuroscience approach. Acta Psychiatrica Scandinavica, 124, 331–348. doi:10.1111/j.1600-0447.2011.01755.x The National Child Traumatic Stress Network. (n.d.-a). Complex trauma. Retrieved from http://www.nctsn.org/trauma-types/complex-trauma The National Child Traumatic Stress Network. (n.d.-b). Types of traumatic stress. Retrieved from http://www.nctsn.org/trauma-types#q2 van der Kolk, B. A., Roth, S., Pelcovitz, D., Sunday, S., & Spinazzola, J. (2005). Disorders of extreme stress: The empirical foundation of a complex adaptation to trauma. Journal of Traumatic Stress, 18, 389–399. Vogt, D. S., King, D. W., & King, L. A. (2007). Risk pathways for PTSD: Making sense of the literature. In M. J. Friedman, T. M. Keane, & P. A. Resick (Eds.), Handbook of PTSD: Science and practice (pp. 99–115). New York, NY: Guilford Press. Edward Franc Hudspeth, NCC, is an Assistant Professor of Counselor Education at Henderson State University and served as the guest editor for the special issue of The Professional Counselor on children with special needs and circumstances. Correspondence can be addressed to Edward Franc Hudspeth, Department of Counselor Education, Henderson State University, 1100 Henderson Street, Arkadelphia, AR 71999, email@example.com
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 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.
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.
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.
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:10.1037/1091-75184.108.40.206
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.
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, firstname.lastname@example.org.
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.
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.
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.
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.
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.
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, email@example.com.