Having a sibling with a learning disability

• Like any sibling relationship, having a brother or sister with a learning disability has its positives and negatives.
• Young people with siblings with a learning disability typically describe these relationships in much the same way as any other young people.
• They describe strong and positive relationships, rooted in love, mutual care, play and a close bond, that also bring annoyances, frustrations, and fall outs.
• However, siblings of a brother or sister with a learning disability may also have times when they face particular challenges that we must be aware of.
• As Sibs – a charity for people who grow up with a brother or sister with a disability – describe, ‘Most siblings also have times when their experiences are more difficult and when they feel angry, sad, or jealous about their brother or sister.’ (Your sibling child’s experiences – Sibs )
• Siblings might have a range of different feelings, including:
  • Not understanding the disability or condition, and not knowing how to ask about it
  • Worry about their brother’s or sister’s health
  • Embarrassment about their sibling’s condition or behavior
  • Frustration about not being able to do things together as a family
  • Feeling that their parents don’t give them enough attention, or feeling unable to ask for help as their parents already have enough to worry about
  • Concern about what will happen in the future to themselves or to their sibling
• All of this can lead to anger and resentment, or sadness and guilt – with the latter often following the former. Your sibling child’s experiences – Sibs
• Such feelings are entirely natural, though may be hard for the young person to deal with, including bringing a sense of guilt, or to express to others.
• It is imperative then that we are aware of these feelings, and of the barriers to discussing them.

Understanding how sibling experiences change with age

• Siblings’ specific experiences and feelings will change as they get older, and as the care needs of their brother or sister change.
• Sibs offer helpful indications of what concerns might be expected as a young person moves through different stages of their childhood ( Your sibling child’s experiences – Sibs):

Pre-school siblings

Primary school age siblings 5-11

Secondary school age siblings 12-16

Older teenage and young adult siblings

Caring for a sibling with a learning disability

• When a young person cares for a family member – as in the case of a sibling who might support a brother or sister with a learning disability – they may be referred to as a ‘young carer’.
• The Children’s Society define a young carer as: ‘someone under the age of 18 who looks after a family member or friend who has a physical or mental health condition, or misuses drugs or alcohol.’
  (Facts About Young Carers | The Children’s Society (childrenssociety.org.uk) )
  • practical help around the home, such as with cooking or housework.
  • personal care, such as helping someone get dressed or with medication.
  • emotional support, such as helping someone cope with distress or a mental illness.
  • helping someone communicate.

That care may take several forms, including:(About Us – Caring as a Young Carer | Carers Trust)

• In your family, the care that is provided by a sibling to a brother or sister with a learning disability is most likely to may be regular – undertaking daily or weekly tasks – or irregularly, such as at points when you, as a parent or other primary carer, are unable to able to offer sufficient care.

Young carers’ rights and entitlements

• • If you think that you child is a young carer, you can request that your local services carry out a ‘young carer’s assessment’ to identify the help and support your child and your family may need, and to link you to available local services.
  • Such an assessment will look at all aspects of the young carer’s life, including school, social life and emotional wellbeing, as well as their wishes and feelings about providing care.
  • Being a young carer: your rights – Being a young carer: your rights – NHS (www.nhs.uk)

What’s it like being a young carer?

• As we highlighted with being a sibling of a young person with a learning disability, offering care to that sibling can have many benefits.
• Just as young people talk positively about their relationships with siblings with a learning disability, so young carers talk positively about the reward they feel from the care they provide their sibling.
• For many, it feels like a natural and welcome part of their role as a sibling.
• However, it is also important that the potential difficulties and challenges that young carers might face are understood, and monitored by family members, teachers, and others who interact regularly with them.
• Someone’s experience as a young carer is not always recognised.
• Indeed, the sibling may not recognize themselves as a carer, given that for many it is just seen as a normal part of family life, and of the sibling role.
• The potential challenges that may face a young carer include the following. Of course, some of these challenges may be experienced by siblings without caring responsibilities.

School

Being a young carer can clearly impact on school life in a number of ways. However, schools are often unaware of a young person’s caring role.

• Some siblings and young carers report being told off and punished for being late, tired or not handing in homework. This may be because the school or individual teachers are not aware of the caring responsibility or the sibling’s disability, or because they do not understand its impact. Informing the school of the situation at home is important, including letting them know if anything changes, or if there are significant events that might impact on the sibling. Information from some of the sources we list below might be shared with them to ensure they understand.
• Young carers can find it hard to manage homework if their home life involves care in the evening. Teachers should be aware that this may be the case, so that not completing the work is not punished. Try to provide your child with some time and quiet space each evening, perhaps suggesting they stay late at school or work at a friend’s, if this is difficult to manage at home.
• For some young carers, the care they provide can lead to absence from school. This is inappropriate and can have a highly detrimental impact on their educational progress. If this is happening, greater support is needed for your family, of the sorts detailed below.

Social life

Being a sibling or a carer of a young person with a learning disability can

• Caring responsibilities can limit a young person’s ability to engage in some of the activities that their peers enjoy. Talking regularly with your child about their social life may help to identify any issues.
• Siblings may also feel unable to bring friends home, either because of embarrassment or because they do not want to add extra strain to their parents. Proactively suggesting friends visit may help.
• Some siblings report a lack of understanding from peers about their lives and circumstances. Help your child to consider how to explain things effectively to their friends. If you know them, you could also talk to their parents.
• Some young people report bullying because of their brother or sister’s condition. This may be in school or through social media. Talk to your child about bullying, and let them know that they should tell you or a teacher as soon as they experience anything like it, including on social media. If your child is experiencing bullying, you or your child should talk to someone at school.

Mental health and emotional well-being

Just as we have focused on the potential impact of caring on your mental health and emotional well-being, it is imperative that we consider that of siblings, including those who also offer care. In the previous section, you considered the signs of concern or distress, and these may equally be observed among siblings or young carers. It is important then that you, and your child, understand how these signs and how to respond.
Support in maintaining and managing a sibling’s emotional well-being may include:

• • Accessing a group for young carers or for siblings of people who require care. Such groups provide opportunities to talk about shared.
  • Ensuring regular engagement in activities away from the home.
  • Encouraging other family members to spend time with them, and to provide them ready opportunity to talk to them, as people they trust, who understand their situation.
  • Ensuring key people at school are aware of any needs and caring responsibilities, so that they can keep an eye on them. This may include specialist pastoral support within the school.
  • Seeking periods of respite for young people providing significant care.

Rather than waiting until there may be a particular problem, talk to your child about who they would go to if they needed help.