By: Robert Casas, MSW
Ambiguous Loss: The Parental Paradigm Shift of Parents Raising Children, Teens, Adults with Developmental Disabilities.
Whenever parents are expecting a child, it is common for a parent to hope and wish for a ‘normal’ and healthy child. Unfortunately, developmental disabilities such as Autism Spectrum Disorder (ASD) may come unexpected or one’s child may be born without any complications, yet complications may be observed throughout the childhood years. It is at this moment that parents endure a parental paradigm shift in which they must learn to accept the child they now have rather than the child that they were expecting to raise. In addition, it is at this moment or any moment throughout the child raising process that these parents may experience forms of ambiguous loss: a loss that occurs without closure or understanding (O’Brien, 2007).
It is also observed and documented that parenting a child with developmental disabilities can be considered an intense form of care-taking. Parents may find themselves in a variety of roles in order to meet the needs of their children: health care provider, case manager, student, detective, protector and advocate (Woodgate et al., 2015). This is important to realize because each of these roles can continuously progress the effects of ambiguous loss that a parent may be experiencing at any age of their child. And not only do they have to take on multiple roles, but many parents of children with developmental disabilities such as ASD may experience forms of sleep deprivation and/or physical strain depending on severity of needs the child presents.
Review of relevant research seems to highlight that best practices for dealing with ambiguous loss is peer support groups and/or parental psychoeducation. According to Schultz, Schmidt, and Stichter (2011), parent education and support groups have the potential to reduce parent perceived stress and increase parenting sense of competence. Therefore support groups with parents of children ranging from early childhood to late adulthood would be beneficial to supporting such families. The wide range of age groups of the children would help parent’s process and discover their own personal resilience and potentially gain forms of closure that will enhance their physical/emotional needs throughout their life experiences.
In conclusion, parents may benefit from mental health therapy or support groups. But it is important for any mental health practitioner to utilize theory to help inform their engagement with such parents due to the lack of evidence-based practices specific to this population. Theory such as ambiguous loss theory can help practitioners empower these parents by providing further meaning and validation to their daily-lived experiences, but also by giving them the knowledge to grow in their own resilience (Boss, 2007). It is also important for mental health practitioners to take a partnership/integrative approach in order to truly learn the stories of these parents to highlight the strength, resilience and empowering themes in each and every lived experience (Solomon & Chung, 2012). Through such cultural humility, parents can reduce perceived stress, discover closure and instill hope/resilience within themselves when provided the opportunity to reflect on the barriers that they have endured, may expect and/or overcome throughout the parenting of their child/children.
So what can you do if you are or know someone raising a child with developmental disabilities? Encourage them to seek social support through local parent support groups or therapeutic services. Self-reflection can be a powerful tool and when utilized through an integrative approach, parent’s can flourish in self-compassionate views of self and reduce intensity of stress.
Written By: Robert Casas, MSW
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Schultz, T. R., Schmidt, C. T., & Stichter, J. P. (2011). A review of parent education programs for parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities,26(2), 96-104.
Woodgate, R. L., Edwards, M., Ripat, J. D., Borton, B., & Rempel, G. (2015). Intense
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