Growing up with a disabled brother or sister Copy

How a sibling copes with having a disabled brother or sister differs hugely depending on a number of factors:

  • The child’s needs and the impact on family life
  • How the parents are reacting 
  • The individual’s personality
  • The support available to the family and individual

Each individual’s and family’s experience is different. Despite this, we have tried to give you an idea of some of the issues families may face.

Two blue characters. They look young. One is standing and the other one is in a wheelchair. They have one hand curled up to his shoulder. His head is supported by a head rest, and his feet are on support plate. He is smiling at another child who is standing, reaching out to them.

The Child’s Needs

The level of care a child needs will make a huge difference to how siblings respond to them. Below are some examples, you can find more examples in ‘Improving Inclusion in the Classroom’.

Example 1: Al and Petra

Al suffers from anxiety badly and struggles to engage socially. At school this means he may burst into tears and gets targeted by bullies. At home he will anger very quickly and hits himself or the wall. He has hurt himself like this. He gets very anxious when he has to leave the house and will do everything he can to delay leaving. Al’s sister, Petra, loves Al and worries about him when he gets angry at home, especially if she thinks he is getting bullied at school. That causes her great anxiety. She also gets very frustrated with him. She likes to get to places on time and Al frequently makes her late, which ends up with her yelling and her parents getting angry too. Family outings often start off badly.

Excample 2: Kobi, Zak and Yael

Kobi is unable to communicate clearly. He dislikes direct eye contact and needs routine. If small things are out of place for him he will explode and start screaming and flailing around. It can take hours for him to calm down. Yael gets scared sometimes and, while their parents are trying to keep Kobi calm and safe, Zak knows it is his job to look after her. He has learned that Kobi can hit them hard when he is like this. Zak understands that Kobi doesn’t mean it but that he has very little understand of what he is doing. Zak gets sad sometimes that he can’t invite friends over in case they do or say something that triggers Kobi.

Example 3: Karina and Bao

Karina is deaf. It means that she often doesn’t know how loudly she is talking, and other children sometimes laugh at her because of it. Karina doesn’t know about that because she cannot hear them but she does feel lonely. Bao feels very conflicted. He hears the other children and feels he should defend his sister but he doesn’t want them to start laughing at him. He is angry with Karina for embarrassing him, angry with other kids for laughing at her and angry with himself for not standing up to them.

Growing up together

Growing up is not easy, and having a sibling with a specific need can make this more challenging.

Children and teens have to go to school all day, do homework and revise. However, it may be that their sibling’s behaviour or routines impact on their ability to concentrate or rest. They may have to care for their sibling and cope with their challenging behaviour. These may include physically challenging behaviours such as biting, scratching, hair pulling, kicking, smacking, throwing and destroying things. Additionally, some children are unable to sense danger and put things in their mouth, so they need to be watched constantly, taking all of their parents’ attention. Some children, especially those with autism may experience sensory overloads and may not be able to cope with changes in their routine. This means the family life can revolve around one child, or can change drastically to support them.

Family time

For the sibling this may mean they cannot do certain things and they are unable to live like their friends. It may mean that the family may not be able to do or enjoy things like they used to. Having a day out, even going for a walk, may be difficult if a child tires easily, has behavioural issues or mobility needs. The family may struggle to find a suitable place to go on holiday, or even go out for dinner. Things people take for granted such as being able to sit down in an evening and relax may be difficult. If these are things that have changed for the sibling, it can make adjusting even harder.

3 blue characters. A parent with their hands in their head and a tear running down their face, a small girl with her fists clenched and who is screaming loudly and an older boy, looking on with an angry and frustrated look on his face.

The family might not be able to relax in the evening due to a child’s behaviour, or medical or therapeutic needs. Sometimes a child might only sleep for a couple of hours at a time, they might need to be changed in the night or need hourly medication. Something as simple as a child standing in front of the TV rocking back and forth while their family are trying to watch it, means the rest of the family cannot enjoy their program. It can be difficult for family members to have their own space or free time. Over time, this can lead to serious complications such as sleep deprivation, stress and even depression. 

Teens

Going through puberty and being a teenager is difficult for everyone. During this time, you experience a lot of changes both physically and mentally. If sleep patterns are also being disturbed and emotions are heightened, teens can particularly struggle with questions around why a child is disabled, the unfairness of one child getting all the attention, the ability of friends to go out whenever and wherever they choose, the compromises they are being asked to make.

Support

When a diagnosis of a medical condition or a disability is made, health services, educational services, social services and charities may get involved with the family but these services will focus on the child with that condition. It is very rare for the sibling to be included in considerations around the support the family needs. Their role as a caregiver or the impact on their wellbeing is usually overlooked as resources are targeted elsewhere. This can lead to them being further feeling neglected.

There are some charities who recognise this and provide support for the siblings. Support groups are helpful and there are resources that are available online. It is worth looking for such groups and places where the siblings can get help and understanding from outside the family.

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