Siblings' experiences

Here are some of the common experiences for siblings of disabled children. They have been arranged into themes which are often connected. Many experiences present challenges for siblings yet some present opportunities for their own development and personal growth.

The effect on siblings of having a disabled brother or sister will also be affected by other issues such as the disabled child’s condition;gender of the sibling and disabled child; birth order; cultural background; religious background; education;economic status; extended family support, and the availability of support services.

Family life issues

Several different carers – frequent periods of living with other family members, specialist sitters/carers to give parents a break.

Limited play opportunities at home due to interruption by the disabled child.

Disruption to their lives and activities – regular hospital appointments, health crises.

The disabled child may have lots of professionals visiting the house but sibling is not acknowledged.

Undertaking more household jobs than their peergroup

Household routines dominated by the care needs of the disabled child, or by their behavioural problems.

Housing needs not being met such as lack of adaptations or space.

Disruption to housing e.g. adaptations being fitted, moves to suitable accommodation.

Relationship with parents

Less quality time with parents who need to provide more time and care to the disabled child.

Experiencing parental stress and anxieties.

Expected standards of behaviour different between sibling and the disabled child with the disabled child’s behaviours being explained away as being part of their condition.

Feeling pressure to be the ‘perfect’ child and not put more pressure on the parents by being ‘difficult’.

Pressure to fulfil the aspirations parents had for two children.

Being rewarded for helping to care for their brother or sister.

Care for brother or sister being unrecognised.

Relationship with disabled brother or sister

Providing direct care for the disabled child e.g. helping with toileting, bathing, medication, hospital appointments, physio and feeding.

Issues around normal sibling rivalry not being tolerated by parents.

Strong loyalty towards brother or sister such as defending them from attacks.

Feeling responsible for the disabled child when away from parents – befriending, supporting them to make friends, ensuring their safety, explaining rules of games, and seeking adult help when needed.

Teaching skills and appropriate behaviour.

Explaining their brother or sister’s needs to others e.g. sitters or carers.

Reversal of expected roles – younger sibling caring for older disabled brother or sister.

Education

Tiredness at school as sleep is disrupted.

Lack of concentration due to home concerns.

Finding space/time to do homework may be difficult.

Being bullied at school specifically about their brother or sister’s condition.

Being asked to support brother or sister by teachers – personal care, dealing with behaviours, socialising.

Taking time out of school – to help with care of brother or sister.

Taking time out of school – to have individual time with parent.

Wondering why their brother or sister attends a special school.

Feeling guilty over academic achievements may lead to underachieving.

Social interaction

Being bullied in the neighbourhood.

Hard to have friends round.

Difficult for parents to transport to friends or clubs.

Limited opportunities for holidays and frequent disruptions to family days out – because of the behaviour issues, practical issues and financial problems.

Experiencing negative public reaction to the disabled child.

Emotional well-being

Unwillingness to concern parents with sibling worries.

Experiencing the difficult behaviours of the disabled child.

Witnessing the concerns and worries of parents.

Lack of connection with other children if do not meet other siblings.

Experiencing the short life expectancy or death of disabled child.

Siblings being asked how their disabled brother or sister is but not about themselves.

Expectations that they will care and advocate for their disabled brother or sister in the future as parents grow older.

Knowledge

Being excluded from sources of information about their brother or sister’s condition by not being included in professional meetings, assessments and plans.

Plans for the disabled child’s future care not being explained.

Lack of awareness of their sibling identity if their role is not acknowledged by parents or professionals.

Unexpected opportunities

Appreciating own health and capabilities.

Developing a caring nature that can lead to a caring career.

Developing more social competence – more accepting of other’s differences, more caring, more insight into people, more tolerant.

Developing a close relationship with brother or sister.

Appreciating brother or sister’s abilities and progress.

Advocating for disabled children in general.

Developing a mature understanding of family life.

Developing pride and appreciation for the care parents offer to brother or sister.

Regarding their family as being special and appreciating their uniqueness.

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