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Children's Medical Services - Special services for children with special needs
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Infant Toddler Development Training
Module 5, Lesson 1

Family Adjustments

father holding baby Raising children in a family in which there is a child with a disability adds another dimension to the complexity and challenges of parenting. It is important to recognize that families of children with disabilities may go through a series of feelings and cycles when they learn of their child's disability and as they grow and adjust with their child. It is also important not to attribute problems communicating with and involving these families solely to what is often called the 'cycle of grief' (Kubler-Ross,1969). Kubler-Ross identified several stages individuals experience when dealing with death in what she called the grief cycle. These stages include:

  • initial shock
  • disbelief and denial
  • anger and resentment
  • depression and discouragement
  • bargaining and
  • acceptance.

This stage model has been extensively applied to families of children with disabilities upon learning at birth or later of a disability in their child and as they grow to accept the disability. Caution must be used by professionals when using this model, however, lest attributions of families being "in denial" or "still in the grieving cycle" be used to explain a perceived lack of cooperation and involvement by these families. Many families find this judgment by professionals to be "condescending and patronizing" (Ulrich & Bauer, 2003, p. 20) and a clear barrier to effective communication and partnership. Often they express the need for support and information, not the need to be taken care of (Diamond & Kontos, 2004).

While there is certainly a period of adjustment upon learning of a diagnosis, families tell us their needs and conditions change over time. Their lives are a series of reactions and adaptations - a series of transitions and re-adjustments necessitated by their child's developmental stages, age, severity of disability, and ongoing medical issues (Lin, 2000; Snow, 2001; Turnbull & Turnbull, 2001). It is cyclical rather than sequential. It is important, therefore, for the ITDS and other professionals to view families' adaptations to living with a child with disabilities as a growth process and seek to recognize the strengths these families bring to that process.

 

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