Suggestions for Caregivers
Parents and caregivers set an example for their children with their behavior. It creates the tone for sibling interactions and influences sibling relationships. It's important for parents to realize brothers and sisters need as much attention and support as the child with an illness or disability. Sometimes they need extra support.
Siblings need age-appropriate, accurate information about the needs of their brother or sister, and parents and caregivers should be open and honest when providing it. At times, siblings may simply need someone to listen to their frustrations about having a brother or sister with an illness or disability. Parents and caregivers can listen and validate these feelings without judging.
Here are some suggestions for parents and caregivers based on individual situations siblings may experience.
Do the siblings feel their time from parents or caregivers is becoming increasingly limited?
- When possible, try to protect certain times to spend alone with siblings (a bedtime story or night out at the movies)
- Organize short-term care for the ill or disabled brother or sister for important sibling events such as sports days or school plays
- Occasionally put the needs of the siblings first and let them choose what they would like to do
Are the siblings feeling guilty about having a brother or sister with an illness or disability?
- Emphasize that no one is to blame for their brother or sister's illness or disability.
- Encourage siblings to view their brother or sister as a person with similarities and differences to themselves.
- Make an attempt to meet other families who have a child with similar health needs. By joining support groups or Sibshops, siblings will have the chance to meet and interact with other children who share the same experiences of having a brother or sister with special needs.
Do the siblings have trouble interacting with the child with the illness or disability?
- Encourage siblings to develop their own independent social lifestyle
- Respect the privacy of siblings and find creative ways for them to preserve it
- Let siblings settle their own differences as much as possible
- Praise all siblings and recognize each child's unique qualities and family contributions
Are the siblings experiencing feelings of anger about having a brother or sister with an illness or disability?
- Make it clear to siblings that it is all right to be angry at times, as strong feelings are part of any close relationship
- Share some of your own mixed feelings or concerns when it is appropriate
- Allow siblings to work through their stress and frustration by engaging in play and other activities
Do the siblings feel their family activities have been restricted or replaced by care giving responsibilities?
- Try to find normal family activities that everyone can enjoy.
- Involve all siblings in family events and decisions when appropriate.
- Limit the care giving responsibilities of siblings. Take advantage of respite care and other supportive services offered by friends and family members.
Are the siblings protective of their brother or sister with the illness or disability?
- Help the siblings to recognize that they can be important and powerful teachers but that their brother or sister needs to be encouraged to do as much for himself or herself as possible.
- Encourage the siblings to keep track of their brother or sister's abilities and progress.
Are the siblings being teased or bullied by their peers for having a brother or sister with an illness or disability?
- Validate the siblings' feelings of frustration and become familiar with signs of distress caused by trouble with peers
- Talk with the siblings' teacher to encourage knowledge and positive attitudes about others' disabilities
- Rehearse with siblings how to handle unpleasant remarks
Do the siblings worry about bringing their peers into the home?
- Let siblings know how they can explain their brother or sister's health needs to their peers
- Invite the siblings' friends into the home both when their brother or sister is home and away
- Make it clear to siblings that it is all right for them to engage in activities without their brother or sister
Do the siblings have concerns about the future?
- Involve siblings in discussions about plans of care for their brother or sister
- Encourage siblings to leave home and pursue higher education or careers when they are ready without making them feel guilty
- In case of a genetic illness, explore genetic information when siblings are old enough and if they are interested
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