“I wish you’d never been born!” – Living with a disabled sibling

How often have you heard one of your children say to their brother or sister ‘I wish you’d never been born !’ For the most part, you will choose to ignore it, knowing in the grand scheme of things, this is just a sibling spat which will resolve itself eventually.

How does the significance change when a child says the same thing to a disabled sibling?

Understanding how disability can affect family dynamics can be tricky at the best of time but becomes hugely more complicated area when applied to siblings as you’re dealing with young people who are going through a period of transition themselves and in many aspects are required to grow up before their time. Sometimes I wonder whether the burden placed on siblings is greater if not equal to the burden placed on parents.

Siblings are often well-behaved, responsible and compassionate, learning very early on that ‘life is not fair’ and that parents can’t always ‘make everything better’. When they are young, siblings may worry that they will become disabled themselves or the disability may be contagious. As they reach adolescence, they may become embarrassed by their disabled sibling and then feel guilty about this embarrassment. They may feel burdened by responsibilities not only of chores but protecting their brother or sister from bullying or teasing. It’s important to realise that even if a child has lived with a disabled brother or sister for many years, there will still be grieving to be done at various developmental levels. For example, as a young child before they are able to articulate or ask questions, they may demonstrate their confusion through behaviour problems. Aggressiveness, resentment, withdrawal, tantrums.

As they get older they may feel guilty about ‘causing’ the siblings disability. For example, a 5 year old child, jumps on his heavily pregnant mum who then gives birth to a disabled child. They may feel that their action caused the disability. They may wish that the child had never been born. At this stage there’s a tendency for behaviour to fall at opposite ends of the spectrum; either overly helpful or completely non-engaged.

At times, parents may be more lenient and forgiving of non-compliant behaviour from their disabled child than they are from their non-disabled child. This can be for a variety of reasons but partly down to guilt and possibly just being easier to give in. To avoid accusations of favouritism it’s important to set clear boundaries for everyone within the family unit. They must be set realistically and with reasonable expectations of all the children taking into consideration their individual limitations. Accepting responsibility is an important part of the maturating process for both disabled and non-disabled children.

Siblings are often the first people we learn to fight with, compromise and make up with. Its important that all members of the family be open and honest in expressing their feelings. Often non-disabled children are fearful of adding to the family’s stresses and so hold their feelings inside to avoid conflict. Openly discussing feelings will ensure that these bottled up emotions do not spill out in explosive anger, depression or resentment.

Finally, just because a sibling can explain his brother’s disability, doesn’t necessarily mean they fully understand it. Having information puts fears into perspective. In most cases the fear of the unknown is worse than the reality. One of the greatest fears that a sibling has is centred around who will look after that child when the parents have passed on. It is absolutely imperative to ensure right from the age that when they are old enough to understand, that whilst you expect them to have some level of responsibility for their sibling, they are NOT expected to take over the role of surrogate parent. You should actively encourage both disabled and non-disabled children to become independent and plan for their future.

In summary, what can you do to ease the pressure on siblings:

• Discuss feelings and emotions, openly and honestly and let them know that all feelings are ok.

• Be truthful (if you leave it up to their imagination, they will inevitably come up with something far worse
than the reality).

• Allow siblings to become actively involved in the care of the disabled child.

• Work to recognize the siblings concerns – they may not be obvious.

• Provide jobs or tasks for both children so that they feel part of the family.

• Make time for each child, your partner and the family as a whole.

• Allow all children time to be on their own.

• Inform others about the situation (teachers, family, friends, parents of childrens’ friends)

• Continue usual family activities and encourage participation in activities outside of the home (after
school clubs, community organisations, scouts, brownies)

• Understand the grieving process (denial, bargaining, anger, sadness & acceptance)

• Keep schedules as routine as possible.

• Encourage children to visit their siblings in hospital – if they are comfortable to do so.

• Keep communication channels open even during hospital visits

• Plan in advance in order to bring some sense of normality, hope and excitement for the future.

• Make financial plans early to ensure care of the disabled sibling as well as allow choices for the non-
disabled

• Include all children in discussions about the family’s future.

• As much as possible, minimize expectations of older siblings to care for their disabled brother or
sister. This is not fair and could lead to resentment later.

• Always try to focus on the positive abilities of the disabled person rather than their disabilities.

Finally a short word on supporting other family members – quite often we are so over-focused on the needs of the disabled person that we lose sight of what is going on for others. Particularly in Asian communities where we still live in joint extended families, the feelings of grandparents can be ignored or trivialised. Grandparents may be experiencing pain for their own child as well as grandchild. Some may go through the same process of denial, blame, acceptance etc until they come to terms with the situation. They may apportion blame onto one parent or they may feel resentful that having done their child rearing and they are now called upon to help at a time when they want to do other things with their lives. The important point is to respect their feelings and where possible share information. Keep them in the loop about the disability, treatment options and what to expect as time progresses.

Well balanced family dynamics come from recognising all the individuals and personalities within the unit and assigning them with equal importance. Importance should not be confused with time. 60 mins spent caring for your disabled child is equally important as spending 15 mins talking and listening to your daughter.

Roshni Shah is a Learning Difficulties Practitioner, Family and Relationship Coach and Parentline Call Taker www.help4learning.com

About Roshni Shah

Roshni Shah is a Learning Difficulties Practitioner, Family & Relationship Coach and Parentline Line Call Facilitiator. www.help4learning.com

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