Over the past several years, there has been increasing amounts of research documenting the caregiving challenges that accompany the day-to-day parenting of a child with special health needs and/or chronic medical conditions. Children who are diagnosed with emotional and behavioral problems (ranging from attention-deficit/hyperactivity disorder (ADHD) to autism – which also can be considered chronic conditions), can pose parenting challenges for even the most healthy, supportive, and committed parents. From the point of receiving a diagnosis to daily management of the range of symptoms and attempting to coordinate care with various providers, the emotional stress experienced by caregivers can be quite burdensome and may affect the functioning of the entire family. In an effort to achieve successful treatment outcomes for the child, it’s important to be mindful of this emotional stress and provide parents with tools to foster their own wellness and mental health while mitigating the risk for them developing their own health concerns.
Bridget is a 10-year-old girl who presents with her single mother for a psychiatric consultation. Since early childhood, Bridget has demonstrated an array of behaviors that have affected her ability to engage with others socially; she was thought to be a temperamentally shy and sensitive toddler, and in elementary school, her mother describes the emergence of odd mental status changes and accompanying motor movements that were later diagnosed as complex-partial epilepsy. Since this diagnosis at the age of 6 years, despite receiving various antiepileptic treatment, Bridget has continued to present with an intractable seizure disorder. She is now prescribed a combination of benzodiazepines, cannabinoids, and other antiepileptic agents, but still has marked functional impairments. Behaviorally, it appears that Bridget has experienced some regression over the years and has been recently tested to have low-average intelligence and a neurocognitive profile characterized by attentional difficulties, executive impairments, and significant processing deficits.
Because of her complicated presentation, Bridget has been unable to attend school-based academic instruction, and her escalating levels of generalized worry have limited her ability to reliably interact with individuals outside of the family. These challenges also have posed difficulties for providers to perform thorough evaluations and provide Bridget with psychosocial interventions to address her anxiety and self-regulatory deficits. All in all, Bridget is a diagnostically complicated young girl. Her mother wishes to “figure things out,” and acknowledges having trouble managing her daughter’s increasingly defiant and unpredictable behaviors. In the past, setting limits and placing stress on Bridget have been thought to be etiologically related to seizure onset. Additionally, Bridget’s mother has been unable to find her own employment while providing care for her daughter and reports that financially, she isn’t sure how she can make ends meet while providing Bridget with medical marijuana. Bridget’s mother’s composure during the evaluation is applauded (particularly when her daughter’s defiant actions are readily appreciated), but she admits to feeling “exhausted.”
Bridget’s case illustrates not only the complexities in attempting to understand and diagnose multifaceted neuropsychiatric phenomena, but also the struggles experienced by families who are challenged economically, socially, psychologically, and emotionally as a result of their child’s difficulties. Although caregiving and parenting is rife with rewarding opportunities for many family members, the provision of such nurturance can undoubtedly place parents at risk for significant hardships. Studies have demonstrated that caregiving demands are associated with poor health outcomes in adult caregivers ( Ann. Behav. Med. 1997;19:110-6 ), and maternal cortisol levels in mothers of older children with autism were found to be significantly lower than normal and the hormonal dysregulation was associated with their child’s behavioral profile. Such findings are similar to those recognized in combat soldiers and others who experience enduring psychological distress ( J. Autism Dev. Disord. 2010; 40:457-69 ).
Upon meeting with Bridget, it became clear that her mother required additional support and services to help care for her daughter’s difficult needs. Through seeking a diagnosis for her daughter, Bridget’s mother also was pursuing an understanding of her daughter’s strengths and struggles, and looking to partner with a provider who might be able to help her navigate the often complicated system of care. By gathering a comprehensive family history (assessing what mom’s vulnerabilities may be for developing her own mental health issues) and thoroughly assessing her current functioning with the Adult Self-Report and the Parenting Stress Index, as a provider, I was better informed to offer family-based treatment recommendations. Through self-reporting, Bridget’s mother endorsed her own mood complaints, occasional substance use, and a constellation of anxiety-based difficulties. We had a thoughtful discussion pertaining to elements of grief, fears, and guilt, which helped to lay the foundation for later exploring how Bridget may best be cared for in the future (such as residential placement). Bridget’s mother shared that she initially felt like a failure for seeking help and not “being able to parent” her daughter; supportive techniques were used to provide her with reassurance and validation.
Using Bridget’s mother’s strengths (resiliency, being a strong advocate for her daughter), other recommendations also were offered to help her to more effectively parent her child and avoid burnout. Not inclusive of suggestions directed towards Bridget individually, these recommendations included:
• Having mom seek her own psychotherapeutic and psychiatric care. Goals of her treatment would be to support her own wellness (through exercise, mindfulness, engagement in positive activities) and focus on developing healthy relationships. By getting her own anxiety under control, assessing her own parenting and coping styles, and additionally obtaining psychoeducation about anxiety disorders in children, mom is primed to develop more successful ways to address Bridget’s defiance and avoid enabling her daughter’s excessive worry while encouraging her to be more socially active.
• Finding respite providers for Bridget. Then mom has more opportunities to seek employment and participate in other out-of-the-home activities.
• Developing a relationship with the school district. This way mom can obtain appropriate supports and accommodations for Bridget to be educated outside the home.
• Exploring community resources through local agencies. This would help mom plan for the future, examine possible sources of financial support, and perhaps most importantly, obtain a treatment team leader and care coordinator.
• Enhancing social supports. This can be done via connections to local support groups.
It’s not surprising that parents of children with special needs experience high levels of stress. Be aware of how such stress can affect a parent’s ability to care for their child, and be mindful that a child’s wellness can be significantly mediated by parental wellness and health. When designing treatment plans, routinely assess family caregivers’ stress levels (including that of siblings and fathers) and evaluate other indicators of stress (such as sleep disturbances, weight change, apathy, and expression of negative emotion). Advocate for programs and systems of care that can address both parental and child mental health issues in a coordinated manner that also enhances family cohesion, reduces social isolation, and decreases parental marginalization.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at firstname.lastname@example.org .