Suggestions from parents concerned about how their children are coping with having a brother or sister with special needs, and their recognition that they may also need support, led us to organise a sibling group within our service. We coordinated two groups for the children over the summer months of 2000- One was held in St Christopher’s Centre in Longford and the other at 2 Valley Bungalows in Mullingar (Sisters of Charity of Jesus & Mary Services). Both services are involved in providing services for children and adults with learning disabilities in the Midland Health Board region. Parents were particularly keen that a group of siblings might meet together to overcome the sense of isolation they may feel.
Before setting up this group, reference was made to the literature, which suggests that many siblings of a child with special needs do adjust well, but that in certain circumstances some families are at risk and experience significant amounts of stress. Labato (1990) states that the potential positive effects include maturity, altruism, self-confidence and a sense of closeness in the family. However, the negative effects discussed include feelings of parental neglect, embarrassment, shame, restrictions in social activity and perceived excessive parental demands.
Siegal and Silverstein (1994) identify four main ways in which children cope with special needs. The first group of children identified are those who take on a parental role and form an alliance with parents through also being a caregiver. These children tend to consider the child with special needs first and often receive much approval for doing so. The family may often come to rely on their help. Although there are positive aspects to this role in the development of an altruistic and caring nature, these children have difficulty expressing even justifiable negative feelings towards their sibling and feel some guilt about such feelings. Moreover, their needs take second place to those of their sibling.
A second common coping method is withdrawal, when a child ‘becomes invisible’. Because of the stress of looking after a child with special needs, parents may experience relief that this child causes so little trouble and thus the child receives positive reinforcement for behaving in this way. The child becomes used to avoiding social situations and makes few demands for parental attention.
The third coping method and the one which most often comes to the attention of professionals is when the child begins to ‘act out’. Here the child draws attention to him/herself through negative behaviour in a way which forces the parents to pay him/her attention.
The final coping method is what Siegal and Silverstein call the ‘super-achieving child’. This is where the child ‘compensates’ parents by being above average. These children tend to be perfectionists and obsessive in striving to do well. Despite the benefits of this coping method, such children may experience much stress particularly where they have to work excessively hard and parental demands reinforce their need to achieve.
Labato (1990) suggests that children cope best when parents talk openly about illness and disability, maintain a supportive marital relationship, talk about their feelings and do not overburden siblings with childcare responsibilities. Siegal and Silverstein (1994) also refer to the benefits of sibling groups in providing the opportunity for siblings to discuss their experiences and to understand and express their feelings.
Coordination of the groups
As previously outlined, the idea to set up a sibling group arose from parents who attended a parents support group jointly coordinated by Fiona and me. This fact proved to be the keystone of the success of the group; having the parents in partnership with the sibling group ensured 100% attendance and two-way communication between group participants and their families. For example, one mother said that she was surprised how individual siblings responded in different ways to their sister with special needs. Another benefit was that the parents became more aware of their son or daughter’s need for time alone with them, and they became more open to exploring respite options.
The sibling group met for four sessions in consecutive weeks for a 1½-2 hour period. The age of participants ranged from 5 to 13; there were eight members, five boys and three teenage girls. Their siblings have varying disabilities; some have Down Syndrome and another is autistic. All the group members have a brother or sister who attends the same junior training centre. The aim of the sessions was to bring siblings together to:
- meet each other;
- share feelings and experiences;
- develop a supportive network for advice and information-sharing;
- promote an understanding of their sibling’s special need;
- provide a forum for discussion;
- have fun!
The group was usually split into younger/older sections, each with a leader/facilitator. Sessions were well planned before the group met. We had discussion and experiential exercises using a whole range of creative techniques, e.g. painting, pen pictures, ball games and writing. There was a mixture of individual and interactive components in the sessions of the selected topics for discussion, e.g. positive feelings and difficult experiences, etc.
Trust was developed in the group by using the same setting and responding to the different emotional needs of the participants; the older children were able for more extensive discussion, while the younger ones played ball outside. Usually there was an optional homework exercise geared to the following session.
One of the highlights of the group was seeing how the members shared their pen pictures of their brother/sister with others and how they were eager to hear about the other members’ brother/sister.
During the final session, the children completed a questionnaire evaluating the sessions in which they had participated. There were very encouraging responses; all participants said that they enjoyed meeting other children who had a brother/sister with special needs. Their responses also indicated that they felt the group had helped them in their relationship with their own brother/sister with special needs. Each participant was given a photo of the group as a memento.
Feedback from the parents was very encouraging also. One mother reported that her daughter said that she really felt she was listened to within the group and that she ‘found this very supportive’. Many parents expressed the hope that the service would continue both for this group and for children in other age groups.
This group has demonstrated the potential benefits of contact between siblings of children with special needs. We hope to continue to facilitate sibling groups and to develop sibling network groups with other areas.