Families and Their Children with Down's Syndrome: One Feature in Common

By Elizabeth A. Byrne; Cliff C. Cunningham et al. | Go to book overview

8

Professionals and Services (2)

This chapter continues to assess the impact of formal support services upon the families’ lives, but adopts a different approach from Chapter 7. Instead of presenting the views of families whose children vary widely in age, information is presented from two studies that concentrated on particular events in the family life cycle: the disclosure of the diagnosis of Down’s syndrome to the parents and the child’s entry into school. These events represent times of potential strain and crisis for families (Wickler et al., 1981), times when professionals are closely involved with the family, and can play a vital support role.

We present parents’ views on the ways in which they were told that their child has Down’s syndrome, and on the type and amount of information and support that they were given. A study in which a ‘model’ service was set up to meet parents’ early needs is described. All of this information comes from Study 1: Diagnosis and early family needs.

The second event to be explored is school entry. We describe mothers’ evaluation of the support they received from professionals in order to help them make decisions about their child’s education. Their satisfaction with the school they chose and their relationship with the school is also discussed. This information comes from Study 2: Views about school.


Diagnosis and early family needs

When the diagnosis of Down’s syndrome is first disclosed, two sets of people with the very different ‘world views’ described in the

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