Friendships are important to everyone. Especially as a young person or child, you need someone to laugh and play with, someone to discuss the issues of the day with. Often friends who you have grown up with will understand if a brother or sister is disabled, but sometimes siblings can find maintaining friendships challenging.
At school they can fall out with classmates if something bad or ignorant is said about their brother or sister. Their brother or sister might become targets for bullies and it might be difficult to hang out with friends at lunch time as they are looking out for their sibling. They might become bullied themselves and feel they have to choose between defending their sibling or fitting in with their peers. These are difficult choices to make as a young person.
Spending time with their friends outside of school might also be challenging. Young people might be reluctant to bring friends home due to a brother or sister’s behaviour. An autistic child might have a meltdown if a new person alters their routine in anyway. A child with learning disabilities might not understand boundaries and be intrusive, embarrassing their sibling. A child’s medical needs might mean the house smells ‘funny’, or medical equipment might clutter the living space. A child undergoing cancer treatment, for example, might be more prone to infection, restricting who can come in or making people worried they might bring infection into the house.
Young people might also find going out with friends or visiting their homes impossible, as parents are not free to take them to places or to chaperone them, or they may have to take care of their siblings, or they might have extra household chores. It can be difficult for young people to talk about their home situation, even with the most understanding of friends. This can lead to peers finding it difficult to understand why they cannot have a playdate, or sleepover, or go to the cinema. Eventually, they might stop inviting them altogether, adding further to feelings of isolation and loneliness.
When a diagnosis is made, especially if it is a medical one, friends and family can be amazing but that does not always last long. Often friends get bored and move on to a different cause, and it is difficult for people to understand that the family needs help even after the initial ‘crisis’ or diagnosis. Many people do not know what to say and feel awkward around the family, so they stop calling.
Take the example of Emmy and Simeon: When Emmy was diagnosed with cancer at 2 years old, friends were amazing. They took big brother, Simeon, to and from school, looked after him on playdates and brought the family meals to ease the strain. But when Emmy finished treatment a year later, those ‘friends’ disappeared. They did not understand that the family was still in shock from the diagnosis, and that even though the practical help was no longer needed, their friendship was still precious.
Family do not always behave as you hope. Family can be over-critical, they may not understand a child’s disability and think that they are being ‘coddled’. The strain on parents can be great and relationships can break down completely, within the house and with members of the extended family.
If you can find out how a young person is supported, it can give you a good insight into the emotions surrounding the child and the pressures they may be under. Talking to parents and guardians and the child themselves, letting them know you are there to provide support, can be a first step in this.
The wider community
The wider community – local shops, religious institutions, doctors and local services can have a role to play in the family’s journey. They can be very supportive and ensure that the family receives the help they need but also people’s responses tend to be around the one child. Let us return to Emmy and Simeon again:
Emmy and Simeon lived near a small row of shops. All the shop keepers were very friendly and supportive. The green grocer offered to deliver vegetables if the family could not make it to the shops, the pharmacy offered to deliver medicines. Other shop keepers always asked after Emmy and how she was doing. They were all very kind and concerned. However, none of them ever asked Simeon how he was doing. It wasn’t until he was older that Simeon was able to express how this made him feel ignored and unimportant. It was nobody’s fault but this was Simeon’s experience over and over again – with shopkeepers, people from their religious community, community acquaintances, all (understandably) asking after Emmy but not him.
Remember: When asking after the family, remember to ask about the siblings too!!!
The Emotional Impact
We have discussed an number of different situations and possible emotions that the siblings of children with special needs and disabilities may feel. Each individual is different and will handle things in different ways.
These feelings may be positive – including pride at how their sibling is dealing with their diagnosis, pride in their own responsibilities and abilities, pride in their special relationship with their sibling, and understanding of their role within the family and how important they are.
These feelings can also be negative – fear for the future, grief for what they have lost, resentment towards their sibling, embarrassment and loneliness.
In this course we have talked more about the negative emotions as this where siblings need more support and help. They can feel lonely and isolated and these feelings can grow and develop into something more serious such as clinical depression. They can begin to behave erratically, violently and even self harm. Siblings may even develop post traumatic stress disorder (PTSD). If you suspect a young person is suffering from depression, PTSD or any similar mental health trauma, it is important to encourage parents or guardians to contact the doctor immediately, and put in place any support that is available at school.