How to Support Siblings of Children with Special Needs
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Sydney mother Michelle, has two school-aged sons and a teenage daughter with a severe intellectual disability; talking about the challenges of meeting all her children’s needs, she says she feels very conscious of making sure her sons don’t miss out on typical childhood experiences like meeting friends, enjoying the time and attention of their parents and feeling at ease in their home. Also aware of juggling the sometimes conflicting needs of her three boys under ten, the oldest of whom has autism, Heather uses an highly organised schedule helped by her husband, carers and friends. “I can’t be in two places at once, and I don’t want any of the boys to miss out on their activities, so I have to think of all the possible outcomes, and plan ahead,” says Heather. Like all parents of children with special needs, Michelle, Heather and their partners have gradually worked out strategies to help them meet the emotional and social requirements of their children, in spite of the considerable adjustments made to take care of their child with a disability.
In spite of the challenges, many siblings say that having a brother or sister with a disability or chronic illness enriched their lives; that they have developed empathy, strength, tolerance and patience because of their sibling relationship. Michelle says she sees her sons, now thirteen and nine years old, display a level of compassion and kindness not typically seen in children their age: “… not all children have been tested the way they have,” she explains, referring to the fact that being a part of a family where one sibling has a disability has exposed them to opportunities to learn and practice those behaviours. And Heather says her younger sons, aged seven and four, accept their brother’s autism as “normal” for him, and find ways to interact and play with him.
However, siblings of children with special needs do need special consideration. In Siblings Australia’s 2009 report, Supporting Siblings of Children with Special Needs, the authors refer to research indicating that siblings may experience “significant long-term physical and mental health problems such as anxiety, depression, low self-esteem and relationship difficulties if their needs are left unaddressed…” and they emphasise that “without support, these siblings are at risk of developing longer-term physical, emotional and psychological problems.”
Talking to Children about their Sibling with Special Needs
As siblings mature, parents see their children’s concerns and challenges change, from
- Provide Age-Appropriate Information: Children’s need for information about their sibling changes; for example, a younger child may need a parent to explain why more time is spent with their brother or sister and an older child may need information about their sibling’s medical needs, care plans or effective ways of responding to their sibling’s distress. As parents age, concerns about who will look after the person with special needs will undoubtedly arise. Ongoing communication about the options being considered and seeking older children’s input can help alleviate worries about their possible role in their sibling’s future care. “When brothers and sisters are ‘brought into the loop’ and given the message early that they have their parents' blessing to pursue their dreams, their future involvement with their sibling will be a choice instead of an obligation,” explains Don Meyer.
- Communicate Openly and Frequently: Children often keep their concerns to themselves, not wanting to cause extra worry to their parents, particularly if they feel their parents are stressed. Tiffany, mother of seven, one of whom has an autoimmune disease and requires frequent hospitalisation, finds that her children communicate best about their feelings when it happens “on their own terms” which she has found may not necessarily be when parents are ready. She says she also lets her children know there are others in their lives whom they can talk to, who are safe, and will listen to them without judgement. Parents who talk to those people about their children’s wellbeing are more likely to have those concerns brought to their attention. Dr Laura Markham, U.S. based clinical psychologist specialising in parenting issues, advises that finding time to connect with children every single day, alone, even if just for a short time, helps kids open up and talk with parents.
- Involve Community and Medical Support Services: The family doctor and hospital staff can welcome children’s questions and provide specialist information about a sibling’s illness or disability. They can also refer parents to the best local community services for information; these will include social workers, psychologists, sibling support groups and community groups.
Expectations of Siblings of Children with Special Needs
Sometimes siblings set unrealistically high expectations of themselves, trying to act as a surrogate parent or taking on too many responsibilities; they may feel they need to always be good, to excel at school or sports, to take on extra household jobs, or look after younger siblings. Adult children often report that they felt the need to make the most of their abilities as a way of compensating for their sibling’s disabilities, thinking this would bring their parents happiness and pride, or at least one less thing to worry about. Conversely, other children report that it felt like their family was always occupied with the sibling with special needs, so that they felt it didn’t matter what they did. Whilst this awareness adds to parents’ worries, it also enables them to be more mindful about how their other children are feeling and ensure they are explicit about communicating only reasonable expectations of all their children.
Where possible, Don Meyer advises that parents also set high expectations of their child with special needs:
“Parents can help siblings now by helping their children who have special needs acquire skills that will allow them to be as independent as possible as adults. To the extent possible, parents should have the same expectations for the child with special needs regarding chores and personal responsibility as they do for their typically-developing children. Not only will similar expectations foster independence, it will also minimize the resentment expressed by siblings when there are two sets of rules — one for them, and another for their sibs who have special needs.”
- Understand Children’s Ambivalent Emotions Towards their Sibling: Parents naturally hope that their children will love and support each other and may ask their typically developing child to overlook their sibling’s difficult behaviours such as pushing, shouting, screaming, and hitting. However, a young child may struggle to