Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling

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In many ways, growing up with a sibling who has a disability is much the same as growing up with a sibling who is typically developing: There will be times of joy, sadness, frustration, love and even hate. The parents may witness an unbreakable bond or an un-sharable one and may be able to positively encourage the way siblings connect and interact, or they may be at the mercy of the ‘family gods’.

Some siblings will have a close relationship with their brother or sister with a disability or illness, and may live just like typically developing siblings, but some children go through a tougher time.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Children’s need can be overshadowed

What is certain is that having a sibling with special needs is a reality that many typically developing children are born into, but the consideration of the needs of those children can be overshadowed by the needs of the differently abled child. These needs can be physical, emotional or mental and so can the effects on the sibling of the differently abled sibling.

The realisation of the needs of the disabled child’s siblings is coming more and more into focus, even highlighted in fiction such as the novel ‘Wonder‘ by R.J Palacio, but the reality is that this field of study is considered disorganised – in fact, some studies have been actioned purely to assess the validity of the preceding studies.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Positive Outcomes

Based on the research discussed below, it looks like the effects of living with a differently abled sibling are twofold: There is the likelihood of problematic feelings but there is also the likelihood of positive personal growth with the whole family.

A positive approach to siblings of differently abled children has been increasing in recent years. In 2006, a study conducted by Elisabeth M Dykens (Ph.D., Professor of Psychology, Director of the Vanderbilt Kennedy Center for Research on Human Development, and Co-Director for the University Center for Excellence in Developmental Disabilities), considered the effects of the positive, internal states of those living with a mental disability and how these mindsets can have an upward effect on those around them.

It highlighted examples of “positive emotions, flow, strengths, and virtues” in people with genetic causes of mental disability. In other words, we can learn a lot from the happiness held by people living with a disability.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Siblings Harbour extensive Positive Feelings

Similarly, it has been found that siblings of differently abled kids are often more caring, kind, sensitive, responsive to other peoples’ needs. They can be more tolerant, compassionate, mature, responsible, independent and empathetic. At typically developing sibling may encounter feelings of pride, that they are the sibling of a child that is learning a new skill, or pride that they are able to understand and help another person to contribute to their happiness.

Siblings can become more empathetic, responsible, resilient and tolerant – outcomes can be rewarding for all involved.

 

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Familial benefits

It is emerging that a likely cause of these interpersonal benefits comes from helping to look after a disabled sibling, or simply living with them, because so much time and effort can be focused on the differently abled sibling, and so much positivity can flow from them.

One study, The Adjustment of Non-Disabled Siblings of Children with Autism, by Ryan J. Macks & Ronald E. Reeve (2006) found that having a child with autism in the family appears to ‘enhance the psychosocial and emotional development of non-disabled siblings’.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Educational Inclusion

Another factor that can positively affect children with different abilities and their siblings is the inclusion of the sibling in the education of the differently abled child or children.

Some research has been conducted into the benefits of including children in the education of their differently abled siblings; Whether the typically developing child was an active educational agent, a co-recipient, an instructor or a model, the study into the education of children with ASD found that sibling involvement leads to positive outcomes for children with ASD across a variety of skills and methods.

In fact, siblings could be seen as better helpers than teachers or school friends because they are family and are ‘involved in the life of the child with ASD on a more regular and sustained basis’.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Negative Outcomes

However, there are a lot of unwanted outcomes associated with the siblings of disabled children that can come from the unfulfillment of emotional or physical needs when parents have to focus so much time and energy on their differently abled children.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Factors negatively affecting siblings

The thoughts, feelings and actions of typically developing siblings can be affected by their age, personality, temperament and birth order, but external factors can also play a huge role, such as the type or severity of the disability, the medical care and needs to the child who is differently abled, as well as the way in which the family adjusts to having a child with disability.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Negative feelings in siblings

It is of course true that a sibling will likely love their differently abled sibling, but it is equally true that they may harbor some unwelcome emotions that they do not want to talk openly about, known as functional impairment.        

Sadness about limitations imposed on the sibling, resentment about the attention given to the sibling, anger, guilt, fear, jealousy and concern are all common reactions to living with a sibling who has a disability.

Stress

They might experience stress if they sense the parents are stressed, or if they are trying too hard not to get into trouble and cause more problems for their parents, who are going through enough as it is.

Anxiety

Research shows the increase in levels of anxiety, depression and difficulty with peers. There can be challenges with ‘interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time’.

Resentment

If the sibling is a teenager, they may even feel resentment that their differently abled sister or brother gets all the attention or that they have to help to look after their disabled sibling.

Guilt

Another common result of these feelings is embarrassment or guilt. The sibling might even feel these emotions if people stare in public, for example.

Fear

The child could sadly be scared about what will happen to her or her sibling and family in the future, or scared for their own safety if the disabled sibling displays erratic or dangerous behaviors.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Some common thoughts expressed by siblings

  • I feel like I always need to be perfect
  • I feel like I can’t express my feelings
  • I hate my disabled sibling
  • My problems aren’t listened to
  • I feel lonely or isolated from my family
  • Why don’t people accept my disabled brother/ sister?
  • Why do I have to help so much?

 

Catalysing factors

Gendered work

Other factors can increase familial and sibling problems in a household where a child with a disability lives, such as gendered workloads for females and being an immigrant, for example. “Personally, in my household, my parents are very reliant on me” said Sanduni Hewa Katupothage, author of a blog about having a sibling with a disability.

“My needs were often neglected, and I didn’t receive a lot of attention. As a result, I had to grow up quickly. Obligatory independence and feelings of loneliness are common among siblings of children with disability”.

Poverty

Further still, low-income families are especially vulnerable because they have less access to resources. Poverty can play a deciding role in the experiences of families with a differently abled child. There is evidence to suggest that living with a child with a disability will likely increase the risk of poverty due to the equipment required and loss of income and social connections.

Then, in a cruel twist, living in poverty may increase the risk of becoming a family with a disabled child, due to the association between poverty and exposure to a range of environmental and psychosocial hazards    

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Family Based approach

Whatever the reaction, the parents can really make a difference. Parental input and inclusion can go a long way to healing these feelings and, by extension, the family unit.

A family centred approach to disability, including the above mentioned educational/ familial inclusion of all siblings at an early stage, can go a long way to limiting the increasing severity and length of emotional and social impairment in siblings. Family centred care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families.

The focus here is on the indispensable role that families play in sustaining and growing the health and wellbeing of children and family members of all ages through emotional, social, and developmental support.

Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Parents can help siblings

If you are a parent of siblings who are typically developed and also differently abled, there are some things you can do to help:

  •  Let them know it is ok to have negative feelings sometimes and that this is normal.
  • Encourage your typically developing child to be a child for as long as possible so as to combat parentification and unnecessary burden being placed on them.
  • Inform the kids about their sibling’s disability and how to work with it
    • This could be exacerbated by a lack of general information about children with siblings who are differently abled, which means they will need help understanding the reality of the familial situation in order to minimise negative feelings.
  • Take time with your typically developing child and let them connect with their friends and family members.
    • This will minimise of the major issues that siblings face – isolation. Studies of siblings of children with autism and intellectual disabilities have pointed to loneliness, problems with friendship groups and depression in children as young as 5.
Sibling Revelry: Growing Up With, and Loving, A Differently Abled Sibling |

Siblings can help themselves

Are you a sibling yourself? Are you experiencing some of the feelings or situations mentioned here? Below are some strategies you can try when things are getting you down:

Self-care

Listen to some music, take a long bath, take a walk or bike ride, start a hobby, get to bed at a sensible time and drink lots of water. any or all of these (and many more) will go a long way to helping you feel better in the short, medium and even long term.

Read

Reading about your sibling’s challenges and skills will help ease fear, worry and conflict.

Talk to your loved ones

Expressing yourself freely is an amazingly valuable therapy and your parents are more interested in your thoughts, feelings and ideas than you ever thought!

Focus on love and empathy

This can be tough to do, but this means loving yourself and respecting yourself as well as your family members. Trying to do this, even when you don’t feel like it, will help you gain some perspective. It will show you the situation from a different emotional viewpoint.

Seek help

If you are very concerned for your family or your differently abled sibling, you might want to turn to somebody for help. This is important for yourself as well as them.

You might want to talk to a mental health professional, or your doctor, teacher or an organisation like ConnectAbility, who have adolescent and family counselling services. They are available to see young people aged 9-18 years and their family members to identify the issues that are causing distress or disharmony. Their counsellors also run parenting skills programs and groups for adolescents to build life skills.

Counselling

Among other strategies, ConnectAbility can provide individual and relationship counselling. They are here to listen and confidentially support young people and their families to achieve positive change by:

  • Providing a safe place to talk about issues and feelings.
  • Providing strategies to cope with family relationship issues.
  • Linking families/individuals to resources within their community.
  • Promoting and supporting the family as a functional unit wherever possible which may include positive parenting skills development.

Contact ConnectAbility at any time and start to ease the strain.

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