Document Type

Academic Paper

Publication Date

Winter 1-20-2019

Description

This checklist is designed to assess the degree of loss in families with children who experience sensory system impairments and in specific issues with limitations to insight and awareness of self and others. There are 100 items in the checklist and the lower the score the higher degree of loss experienced. This is a pilot paper for this assessment of losses experienced within families who have children with sensory limitations, and it is designed to gather input on the following factors.

Construct, Trait, Skills or Competency

Primary Factor

  • Integrative Reason

Insight, awareness, clarity of thought

  • Eco-System Development

Individuation, environmental control, resilience

  • Family Vision

Attachment, bonding, promoting values

  • Mindfulness

Time consciousness, worry-free parenting, validation

  • Expressed Communication

Openness, social connection, emotional connection

  • Positive Mental State

Family Joy, hope, future perspective

Positive Regard

Pride in family, pride in self, empathy

Comments

The types of losses experienced by families who have children with sensory limitations are multiple and ongoing across development and the life cycle. Some of these losses are not ever resolved and cause the families to experience complicated bereavement or a "partial death" syndrome that is traumatic. They experience the loss as they witness other individuals enjoy the accomplishment that comes over time as their child grows and develops. These can frequently serve as reminders of loss and continued grief and trauma can be experienced by the parents and other family members. After the child is beyond school age and educational support, they sometimes do not qualify for vocational rehabilitation services and may be stuck in service systems that do no offer future growth. When this occurs, the family may continue to experience shame and multiple losses that are emotional, social, and financial. It is critical that these losses be assessed to develop support systems and services that allow the family to maintain a sense of dignity and future perspective.

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