Below are some of the concerns of siblings of children with disability (including any developmental delay, disability, chronic illness or mental illness). Of course NOT ALL siblings will experience all of these but concerns mentioned by authors, parents and siblings themselves include:
Feelings of isolation
Siblings can feel isolated and different from those around them. They may be unable to interact in the usual way with a brother or sister with disability. It may be difficult to have friends over to play or to take part in community activities. It may be that parents are too stretched for time or the special needs of a child may be too unpredictable for parents to feel able to fit in regular commitments like ballet classes, sport or music lessons. Their life often seems different from that of their friends.
It may be difficult to talk to friends as they feel their friends may not understand. Also it may be difficult to talk to parents because they see that they have other worries and don’t want to ‘bother’ them. They might feel that they shouldn’t ‘complain’.
Lack of information
This can lead to misunderstandings about the disability and fears that they have caused the disability or that they too will develop the same. They may struggle to explain the disability to others.
Relationship difficulties with brother or sister
It may be impossible to give and receive affection, play together and share other aspects of a sibling relationship with the child with disability. There may be disappointment, frustration, fear or guilt, but at the same time, intense sorrow for what their brother or sister is going through.
Sometimes brothers and sisters think their feelings do not matter to the rest of the family. A child with disability or a chronic illness may require a huge amount of attention and energy from parents to ensure they get the necessary care. As a result, young siblings can feel left out or even neglected. They often perceive the needs of a brother or sister as being more important, which can impact on their self-worth.
Anger and resentment
This builds up when family routines are disrupted and when the child with disability is treated differently. Not only does the child with special needs receive more attention but sometimes he or she is allowed to behave in ways the sibling is not, e.g., acting out or breaking family rules, and it all seems so unfair. There can be anger at the child with disability and parents, but also at other people outside the family whose reactions cause a sibling to feel uncomfortable.
There can be embarrassment about a brother or sister’s appearance or behaviour, especially in public and when others tease or stare. They may feel embarrassed about duties at home that peers don’t have, e.g., bathing and changing nappies, especially if the child with disability is older.
Siblings may have fears of developing disability themselves. There can also be fear of the physical strength of a brother or sister. In extreme cases siblings may fear for their safety, or actually be harmed.
Siblings may feel guilt because they do not have disability or illness (‘survivor guilt’). There can be guilt about their own successes when they see a brother or sister struggling with basic living; about typical sibling conflicts; and also shame if they have negative feelings toward a brother or sister.
As well as feelings of sorrow for what a brother or sister deals with, there can be feelings of loss and longing for a ‘normal’ brother or sister, especially if there are no other children in the family. As children, it can be difficult to understand those feelings or know how to deal with them.
Pressure to be perfect
Siblings may feel they have to be perfect, or to be successful. This may be because they are trying to gain attention or they may want to be the ‘good’ child, to not ‘make waves’, in order to protect parents from further distress. They may worry about how parents are coping. They may also feel they need to achieve in academics or sport to make up for any limitations of the child with disability.
Caregiving and responsibility
Some children enjoy helping out with their brother or sister, and if this is valued, then they can develop skills and a strong sense of their own competence. It can really add to a child’s self esteem.
However, some children feel that they should have more choice or that the responsibility is too much. If the balance is not right they can miss out on the usual socialising activities of their peers. The child can feel huge conflict between caring for a sibling, feeling guilt and resenting missing such activities.
Reactions of others
Some siblings might be upset by how other people sometimes act towards their brother or sister with disability. A sibling might feel very protective when a brother or sister is teased or stared at, but they may also feel embarrassed or angry and not know how to cope with the feelings. Also they may be teased or bullied themselves.
One of the main tasks of adolescence is to develop our own identity and separate from our families. This process can sometimes be more complex for siblings, as they try to balance their own needs with those of their family. For some, creating independence is a struggle; for others, the need to get away and have their own space can be very important.
A sibling can have concerns about the future for themselves and their brother or sister with disability. What will happen when parents are no longer able to provide care? What role should the sibling play? Will they be able to find a partner in life who will share the responsibility of a brother or sister with disability? What about having children themselves? How can a sibling balance the responsibility to their own family and to a brother or sister with disability?