Chronic Sorrow: Reproductive Loss, Developmental Disabilities, and Severe Psychiatric Problems

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Over at America magazine, Christopher Pramuk has written a sensitive and provocative article titled ” Hidden Sorrow: Praying through Reproductive Loss”. Part of the beauty of this article is that it makes others aware of the intense grief evoked by this kind of loss.

I wrote an accompanying piece Hidden Sorrow, Chronic Sorrow about the frequently unacknowledged grief experiences of parents who have retarded children.

“This was depicted in ‘Chronic Sorrow Revisited: Parent vs. Professional Depiction of the Adjustment of Parents of Mentally Retarded Children’ by Lynn Wikler, Mona Wasow, and Elaine Hatfield [American Journal of Orthopsychiatry, 51(1), 1981, 63-7]. The authors sought to discover just how ‘time bound’ and ‘chronic’ aspects of sorrow were experienced ‘by the parents themselves.’ An interesting discovery was that—while sorrow might be chronic—it was often not continual or continuous but rather was evoked or exacerbated by certain developmental experiences.

“There were ten specific developmental crisis points for the parents of retarded children where grief and sorrow were experienced intensely: (1) diagnosis from a specialist; (2) time when child should have begun walking; (3) time when child should have begun talking; (4) younger brother or sister overtakes the retarded child’s abilities; (5) serious discussion of placement outside the home or actual placement; (6) beginning of school attendance; (7) management of crises (behavior problems, seizures, health problems) unique to the retarded child; (8) onset of puberty; (9) twenty-first birthday, which for others is a milestone of independence and entry into adulthood; and (10) serious discussions about guardianship and care for retarded child when parents die.”

In thinking more about this, specifically as it might relate to the philanthropic mission of AMHF, I suspect there is much unacknowledged grieving that goes on when someone we love has a chronic and serious psychiatric illness. This must be a grief that doesn’t go away, one that is exacerbated by life’s milestones. While the article by Wikler, Wasow, and Hatfield suggests ten grief-releasing events for parents of retarded children, I suspect there are complex ways grieving doesn’t go away but is experienced again, perhaps anew, when persons with severe psychiatric problems encounter and pass life’s marking points

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