Abstract
Diagnosing childhood disabilities is complex. The process can begin in utero and last well into early adulthood. Often doctors are proactive and informative, but occasionally the process is impeded by doctor denial or discomfort, family denial or discomfort, incorrect test results, complex symptoms, or lack of access to health care. Some families seek diagnoses, some accept diagnoses, and some become conflicted as certain members accept and others reject medical evaluations. Often symptoms change over time or appear in multiples. Instead of being a single event, diagnosing is often an ongoing process that may last a lifetime. Here the grandparents tell us in great detail how families expend time, energy, money, and patience pursuing, accepting, advocating for, and acting upon diagnoses for their grandchildren. Some of the grandparents we interviewed were the first to notice symptoms and to encourage professional assessment. Some proactively learned as much as they possibly could about the condition and possible treatments. Others tried to follow the lead of the parents, providing support when asked. Some grappled with how to respond when the parents or doctors dismissed symptoms, provided confusing or conflicting diagnoses, or delayed or forfeited treatments. When the process is smooth, grandchildren tend to receive early, proactive interventions; when the process is bumpy those interventions are often delayed and grandchildren go without needed therapies.
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Notes
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Margetts et al. (2006: 570).
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Harrington Meyer, M., Abdul-Malak, Y. (2020). Diagnosing Disabilities. In: Grandparenting Children with Disabilities. Springer, Cham. https://doi.org/10.1007/978-3-030-39055-6_4
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